Hello All! I'm stopping in to report where I'm at and get a needed bounty of encouragement. The newest rheumatologist I found through the Vasculitis Foundation here in the states had been wonderfully supportive of the DSNS taper and knowledgeable about GCA. I trust him.
I just saw him last week and will be getting blood work every month while continuing the taper from 16.5 of prednisone. The amitriptyline he added three months ago has allowed me to taper. I'm only needing 15mg of that. He told me GCA patients experience symptoms and recovery in varying degrees: nothing is uniform across the board for all patients. He also said GCA treatment hasn't yielded as satisfactory outcomes as other diseases. I'm having to really process this. What Will life be like?
At this point, I'm experiencing drenching night sweats, and low dips in outlook- get sad sad sad . . Frustrated that I can't enjoy a whole day of low energy activity with my grandkids without positively crashing. My legs are weak and tire easily. Blah blah
I know you have heard this from me before. Am I still fighting reality? Maybe, maybe it's that it takes repeated or constant inner work to accept the change and all the unknowns that come with this stinking disease.
A disease that is invisible to those around you; No crutches, bruises, bandages or limbs missing. "What is wrong with you? Other than that extra weight you've packed on?" We need a tee shirt that says "GCA PMR Warriors" because sympathy and empathy wear thin after a year...and those who love you don't want to accept the truth.
I'm going to wait for you to talk now....
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Blurry62
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Oh Blurry you are having a big dip into a dark place that we all know well. You will emerge “ wounded but not dead sire”!
I wonder what your Rheumatologist meant by his/her cryptic remark about outcomes? Did he simply mean that the heavy steroid treatment leaves you with symptoms, like the sweats, the depression, the awful fatigue and short energy span? With GCA I always look to DorsetLady and her recovery - waking one day and just knowing that it had fled. Even though GCA had taken an awful toll and she had arthritis and operations to deal with. She has all her bounce and some left over to offer to others. That day will come for you too.
So I have scraped up some bounty for you. I hope it helps pull you out of this ditch. Onward! You are indeed a warrior and certainly not beaten yet, 🙏💕
He said, "you won't ever be 100 percent. You have a permanent change physiologically: Narrowed arteries from GCA don't transport blood/ oxygen as efficiently. Prednisone has weakened muscles that you will exercise and be able to strengthen, but not back to your normal."
I suspected as much! Nobody tells us that when we sign on for this thing do they?
Kind of dawning on me though. I expect it could have been the something worse that I thought PMR was, my grandma had disseminated sclerosis - definitely worse.
Well NONE of us will 'ever be 100%' again after the ravages of 'LIFE" and 'TIME" not even including the possible impacts of diverse diseases like GCA - BUT with that rather gloomy outlook of irreversible damage firmly ingrained there is then even LESS chance I reckon of feeling 'good' again. While I concur we each experience this or even any illness 'subjectively' (how can we not anyway ?) I don't agree we should take such a negative longer-view. The way I look at it and as I've (jokingly) said to my kids when they were younger and they were rude enough to imply I might be slightly 'losing it': "Well I started with a LOT 'more' (ie. 'intelligence') than either of you so I reckon I can lose a few marbles and STILL be ahead in the game" ... well you get the gist...
Not only is our perception and experience of ILLNESS subjective - so of course is everything else and there is no such thing as a perfectly functioning brain and body - this is an 'ideal' but who could anyway measure such a 'reality'. Notwithstanding the fact we all change over time - some of the most insightful and wonderful things I have ever read or heard or watched have come from people who cannot be depicted by ideal stereotypes of 'health' - often au contrare !
He is and I really do appreciate and trust him. I believe he felt the need to get my expectations in line with reality. That's not to say I couldn't do better than he expects but, perhaps he is concerned that I'm still working on acceptance.
I feel he was at least being honest, like everything in life it is unique to the individual, at least you can set your own pace and aims with a rheumatologist who is not just studying a text book. The emotional impact on an illness like GCA is just as much to come to terms with as the physical. It’s so difficult when you hit a low, but try and focus on something you have done recently that has lifted your spirits, yesterday I went out, on my own for the first time in months!, feeling a bit worn out today but trying to focus on how good it felt to have some independence back.
You're right. It's been rather difficult in my head. Lots to process and not sure I'm doing it well.
This morning I had one grand daughter come visit ( instead of three) and we sat on the sofa a made doll clothes. I enjoyed it; she was content and pleased.
Hi blurry62, I wondered at least 2 things on reading your message. First that you may still need to be at a slightly higher dose. The problem when the reduction are 2.5mgis that you may have past where you need to be. The second was that I wondered if the dr was talking about biologics like actemra not being as successful with gca as it may be for RA for example. No need to get too downhearted about that. At least he is giving pred a chance.
I said at least 2....the third is I wondered if you had gone low carb. It does make you feel a bit better if your blood sugar isn't dancing around evrrytime you eat. Invisible illnesses are difficult to manage and for others to understand. You need to bring some joy in your life again. Have a think of something that doesn't take too much energy that you and your oh can do together. For example, going to the movies or to a local park to sit and enjoy the winter sun. No one wants to feel as bad as you do at the moment and I am sure your loved ones understand deep down that you are doing what you can. Hopefully others will have some suggestions too. It's after midnight in the UK so many will be in their beds... but hopefully some of your compatriots will reply too. 🌻
How old are your grandkids? I bought an inexpensive board game called The Enchanted Forest. It has an inspiring board and lots of little trees . You have to remember what fairytale object is under the tree for the next time you get to that part of the board, eg. Glass slipper. Anyway, it’s all they wanted to do with me. It transfixed them. Really restful, memory game. Theo is a very bright 5 year old and Rafe is 2 but copies his brother. One of your eyes can be asleep and everybody is seated as they travel through the forest.
Or a lego toy can give you an hour of peace. Perhaps colouring in too. I got colouring books for the kids and an adult colouring book for me. Kept us all calm and quiet for an hour. I used to use the silent game with them too....who ca g the longest without speaking. I was first a couple of times so they made fun of me then they all sat quietly for 10min chunks just looking and giggling at each other then I would "accidentally" break the silence. A free game and fine as long as not hypercompetitive!
Silence in the courtroom, the monkey wants to speak. Ape speaks first. It’s always Rafe aged 2 and a half. Theo and I like quiet activities. He comes from a loud extrovert family and likes the peace with me.
Hi Blurry62. You have really been through it, clearly a very bad time for you.
Strangely, I read this site rather by mistake! My husband has GCA and many of the varied little health gifts that go with it.
But he’s just getting so much better!
I just wanted to give you a little positive at a hard time.
He and I are now talking, walking and having time together. At last we both walk the same speed, and we’re getting much fitter and closer again. It’s been a very hard few years.
My message is to say that neither of us will even ‘get back to normal’. It just won’t happen. My heart is pretty damaged, and an observer, we both have lots of restrictions, but we’re learning to still enjoy life.
What’s the option? Wasting the only life we’ve been given.?
I do hope this hasn’t sounded too direct. It is meant to be helpful.
Now over to my usual site ..... The British Heart Foundation’s.
Four years down the the line of both GCA & polymyalgia I've had many, many ups and downs. I've just started on actemra to get me off the dreaded prednisolone - but I look well.
I get that near enough every day - " but you look well", it wears thin when you feel like c***.
Each time you use the word 'dreaded' or something like it - people get worried and their fears are reinforced and they take risks.
There is not one other thing, currently in this world, that could stand between losing total or partial vision. Once your vision goes it is gone.
Some people are on pred for life and some of those are only 5 years old. A Lady with PMR had a Grandson who had a rare illness and started on pred at 6 years old.
In 2012 (London Olympics), he got to take a torch (when they were going round the UK. Without pred, no Grandson, no torch and no joy. His big grin was wonderful to behold and I will remember that grin forever.
Have a lovely time - your sight is saved due to pred.
Me, GCA only, in a wheelchair with a rare side effect for 6 months. 5 years down the line, remission and still ongoing.
I am sorry you think I was telling you off. I did not mean it that way at all. It is just that people tend to say the 'dreaded pred' and this can make people more unsure and worried.
If I have offended you, please accept this apology.
Yes it does. I understand your feelings about the prednisone. It saves us but it's a love hate relationship. I am thankful for having it. On the other hand it leaves it's mark... As most other drugs do. Thank you for answering. How are you doing with the actemra?
Hi. 3.5 years with GCA. Possibly PMR 1_year. However. Once the steroids have made you safe from GCA and sight loss look at your life and see what you have to do to live with steroids. At high doses I could hardly walk but I did not stop doing anything. I never took time off work I went out and went on holiday and looked after my granddaughter. I am not superwoman. It was hard. But every success made feel stronger and me and my family laughed at my struggles. Exercise and better diet were key to looking after my self and a positive outlook. My GP saved me from going blind and I love her forever
I have worked, gone to school and pushed through,too. Until ten months ago. I had to pull back because my body was depleted and needed more rest and less stress.
I can't fake it till I make it anymore. I'm too weary. I do however strive to be upbeat and present for my family.
“You won’t ever be 100%” - well maybe not, but the only problem I can definitely put at GCA’s door is loss of one eye - but that’s because of my then GP’s inability to diagnose it!
Arthritis I already had, so that’s not GCA either.
I'm sorry you are feeling low , this time of year when we want to do so much but can do very little , can make us feel pretty blue especially if we are still just getting to grips with GCA .
I'm hoping I can add some positives .
Your wording of what your Specialist said interested me. If it was pretty close to his own words it could be that the timescale you are giving yourself to improve in is just too quick , and your ambitions are higher than what you can achieve currently , and so the statements read as far darker than he intended.
GCA patients do vary in their progress of recovery , nothing is uniform , can simply be his way of trying to explain that you may need to expect to get to where you want to be at a slower pace than you would want to.
GCA treatments not yielding as satisfactory an outcome as with other Diseases can be his way of saying , you don't get back on your feet with the medication at quite the same rate or won't be100% pain free in the way you can do if you have PMR alone and side effects are part of the course.
Unless , you have been unfortunate enough to loose you vision though , GCA in time can go into full remission and you can have an excellent quality of life back in line with your age and other health issues.
He hoped , I think , to try and explain to you that the short term outlook can be harder and have more side effects than people expect , unfortunately , it has made you begin to speculate about the long term outlook from the same perspective and that has created a negative effect.
If you want to manage the long haul with Chronic Illness it is good to be realistic about the length your illness may be , but after that the best way to improve is to concentrate on what you can do from Day to Day.
And , to stay positive and help your recovery , celebrate all of the little achievements and tiny improvements. That Positivity gives you real physical strength by boosting your mood and in turn re energising you to keep on fighting , but fighting at a daily pace that your body can cope with. Don't push the limits work within them and they expand on their own.
From there the possibilities are endless.
The same is true while looking at all parts of your Life with Chronic Conditions , including spending time with Family.
To badly paraphrase Julia Roberts in ' Steel Magnolias' , " I'd have half an hour of something special , than a Lifetime of nothing Special at all."
Instead of thinking in terms of whole days of light activity with children or friends think in terms of a few special relaxed hours.
As , if you try a full day while you are just beginning you do end up flat on your face at the end of it and are back at square one again.
Your loved ones are just as happy to spend an hour cuddled up with your on the sofa playing cards or watching a film as they would be doing the usual activities they can do with everybody else , as long as they can feel your love and see a spark of happiness in your eye while you are doing it.
There are so many silver linings to be found each day even when we are at our worst , it's just sometimes hard to see them when we put worries and ' what ifs' in front of them.
Be patient , look to the day , not the week or year , ahead and the positives will start to work their Magic.
I think you may need to go back a tad on that reduction - the drenching night sweats would be a sign of an approaching flare for me.
I think he is unduly pessimistic - I know a few with GCA who are back to normal when you take the increase in age into account, that cannot be separated out, or loss of vision because of poor diagnostics. I think PMR probably leaves longer-lasting effects though I also know people in their 80s who a year post-pred said they felt "normal".
Another thought... I was put on amitriptyline for migraines. Although it's an antidepressant I found it gave me a very low mood. I was miserable! I was told I would adjust but I didn't and asked to be switched to something else. Maybe ask whether that drug is right for you. I wonder if it reacts differently due to prednisone or just differs person to person.
I think many people with chronic pain are on low dose amitriptyline. I was on between 10 and 40mg for 20years for fibromyalgia. It an take 6 to 8 weeks to settle even at low dose. It's more likely to be person to person than interaction with pred. 🌻
Good to know. I was put on a low dose as a preventative for migraines until they found out more information about a clot. They switched it to a beta blocker to prevent migraines and it also keeps the heart rate down - since mine was typically fine except once in awhile, I now get asked if I feel dizzy because it's outside the normal range on the low side! So far no side effects so I'm happier with the propranolol than I was with he amitriptyline.
I haven't been on here lately. I was diagnosed with GCA/PMR in 2013!!!! All of a sudden I can now repeatedly taper .5 mg. on the DNS method. I am shocked. I do have 2.5 mg. tablets. That's how I wound up at 3.75 mg. Now tapering to 3.25 mg. I seem to be able to taper just as PMRpro and Dorset Lady have suggested. After I am at 6 days of my new lower dose, (without a day of my old, higher dose) then I start with another new dose lower by .5 mg. I do not have significant pain. It's even possible that my being cross eyed has abated some. I'm not holding my breath. I gave up thinking that this would happen. When shopping for bras, I noticed that the measurement of the strap which goes around my back has decreased by about 2 inches???!!!!! I wish it were my abdomen, but maybe that will come. I am 73 now. It will take me more than a year if I really do get off Prednisone. Just posting to incite hope that maybe for some of us "long haulers" there is hope. Note: I believe that I stayed at around 5. mg. for about 2 years. I couldn't get past that dose.
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