Hello all, I am breaking the dark surface of a GCA flare. Several of you will remember about ten days ago I said I was depressed, frustrated, and trying to cope with 15-16 months GCA/prednisone symptoms( exhaustion, sadness, cramps in my feet and legs, sadness, and more sadness) and needed something--anything- to change for the better. I received some excellent input and support as always.
I wanted to try splitting my 17 mg of prednisone to see if It would enable me to bypass the 2:00 in the afternoon crash dive into the couch. Within twenty-four hours the headache was creeping in. The third day it was worse ( level 5 ), and I chickened out. I went back to the usual hit of a full dose first thing on rising.
Day four arrived and brought a significant emotional upheaval with our son. It was heartbreaking and majorly stressful. Headache shot to a level 8 that night and within two days the specialist increased meds to 25 mg. of prednisone and kindly advised me to try to de-stress. ( hummmmmmmmm)
I don't know for certain what caused the flare: Was it splitting up my steroids--part in the am and part in pm)? Was it the stress of mothers' broken heart? I suspect it was both. I just want to throw this out so others can ruminate on this experience. Maybe also to add a bit of caution if you are thinking about the same thing I did.
The great news is my specialist is on board with a much slower taper. I faxed him the DSNS taper and essentially begged him to get on board. He is listened! I am comfortable moving forward with him now. My doctors are certainly tired of hearing me say, " the collective wisdom I've garnered from the GCA/PMR forum says....."
Prednisone is brutal. GCA is brutal. Life is rarely smooth going for long. But, as many of you have told me to do- I am counting the good things today-- I'm thankful for the beautiful flowers growing in my yard this year. Thankful for homemade-healthy-pizza and good music, my dogs, friends, family, and the good Lord that gives me the strength to do this journey.
Thank you, too. I appreciate you all very much.
Blurry62
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Blurry62
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Sorry to hear about the stresses and strains. I am sure you are right that it was probably a combination of the pred experiment and the emotional stress. Hopefully the additional.pred will get the symptoms under control. It's good to take in the good things in the present-taking pleasure in the little things. Hope you are on the up.🌻
I am so sorry to hear about the stress and sadness you have been consumed by - may it lift soon. Nothing causes more stress and more joy than children.
I have never managed a split dose. I am alternate dosing for my Adrenal function and my body doesn’t even like a 0.5 deprivation. So glad you are breaking the surface of the flare. Sending you blessings at this difficult time. X
Overwhelming fatigue mostly. I had a severe cold about 3/4 weeks ago and don’t seem able to shake of the residual symptoms. My Osteoarthritis pains seem worse. I have difficulty getting out of our car and can experience sharp knee or ankle pains when coming down stairs. The typical PMR pains are absent. Emotionally I feel quite vulnerable and more easily upset than normal. On the upside, I can feel inexplicable bursts of energy and positivity. I hope these are signs of recovery.
Thinking of you though with the additional stress of family worry. I do not have that but I have been there in the past.
Good Morning, I can relate to the particular brand of 'fragility' you're talking about. Chronic illness is such a huge a huge emotional adjustment. (to say the least) We, by necessity, become very aware of what is going on in our bodies and around us as well. People affect us: their moods, responses to our physical changes and challenges, or a lack of understanding for the day to day struggle of the GCA/PMR warrior...It is a war, don't you think? Feelings are enhanced by prednisone.
I ride that emotional roller coaster at leaast once each day, too. It's so nice to know I'm not the only one. Sometimes the tears just inexplicably burst forth, clear up, and I move on to quiet contentment. But, I know this is likely to change in an a few hours or so. It's helpful for me to know the pred is doing this. I can kind of "step away" from the feeling, try to objective and recognize why it's happening. Kinda like when you have raging PMS and hate your mate.....you KNOW the emotion is hormone driven rather than REALITY.
Most times that is. As I have shared, when the prednisone gets about 22mgs, my ability to sort it out is tanked. Misery ensues.
Yes , if I remember your last post Dorset Lady , our Goodly Goddess , did say that splitting the Pred dose wasnt usually advised with GCA, as it can sometimes with PMR , and PMRPro suggested a nap around your slump time to help with the symptoms.
The added stress on top of already trying a new way to take your medication was obviously a very sad cherry on the already hairy cake.
Of course , it could also have been a symptom from the start that your Pred dose had gone below what you require each day , so luckily the increase you got will help get you over the flare.
It might help to stay on it for at least a month to properly settle , and if necessary talk about another small increase with the GP if you are still suffering too many symptom markers and pain.
If you have a lot going on to increase your stress at the moment , as well as possibly needing to get extra help for the other pain and mental health issues you were having , you are better not attempting to taper until this is more settled , excess stress does not help us cope with the physical changes of tapering and can send us back up the doses again.
Hope things start improving soon and keep in touch. We are here if you need us.
I have been getting on-going grief/support counseling. Unfortunately, I am very sensitive to medication side effects, and pred has wreaked havok with my brain chemiistry, More so than than the norm. I have been doing better these last three days however. I am so glad.
Oh yes, I remembered DL saying it wasn't a good idea to split my Prednisone dose up with GCA. I made a choice out of frustration, and it wasn't the right one. Another lesson learned. Onward we go........
Although the effect was unfortunate , we are all sad you have had to suffer another flare with all that you are going through , at least , as you say , you know how that splitting the dose isn't good for GCA from personal experience and it's an option you can tick off the list .
You never know , a GO could advise you try it in the future , but you would be able to tell them you have , it caused a flare and then be able to move on to other suggestions more quickly without waiting for another appointment.
With your ongoing side effects and pain , and drug sensitivities , it may be advisable for you to request that they now start checking you for other conditions like Fibro and Neuropathy issues on top of your GCA , and that you get a full screen of drug and food allergy testing , so that they can see if there is something else going on affecting your recovery , and make sure that your present drugs are suitable for you , and which other drugs you can be tried on to help manage your other symptoms too.
It is a long road , and very tiring , when other things seem to be getting into the mix of symptoms but it will eventually bring you the answers and help you need.
Checking for Fibromyalgia/ Neuropathy doesn't necessarily require any new blood tests , as I assume you have had various blood tests already which helped rule out other arthritis and disease issues when they confirmed your GCA.
Fibromyalgia is then considered as the cause of ongoing nerve pain if you have continued to have ongoing pain and symptoms , especially in 5 or more of 13 specific pain points around the body for a period of 6 months or more , despite the treatment you have received for other conditions .
You can obviously already prove this from your clinic records which makes things easier for you to argue more checks and for them to believe they are justified.
From that point , you can be assessed by a rheumatologist whom if they think that Fibro or some other form of Neuropathy is likely to be the cause of the symptoms,
will often choose to trial you on the first line muscle and nerve relaxant drugs before further examination .
Or they will send you to a Neurologist straight away to do various nerve tests and check your history to see if it is " just" Fibromyalgia or wether other types of Neuropathy are causing the Fibro too.
If your Rheumatologist is not willing to do further assessment you can request for your GP to make an " urgent" referral to Neurology because you are suffering a high level of pain , and have been for sometime despite treatment .
You can note down and remind them of the ongoing symptoms they are seeing and the flares , which seem to give enough evidence for Neurological Assessment.
There are some extra tests that they can do urine and bloods to assess your catecholamines , but they may not do these if there is enough clinic evidence of the pain and other symptoms on the day , as these test results can be blurred because your adrenal function is being affected by using steroids .
The other thing they do need to assess is wether it could be Steroid Myopathy , that the use of high steroid doses , or the yoyoing of your dose , has caused some drug induced nerve issues , this is very important , as , if it turns out that the drug although helping treat the GCA is causing other health issues , you may need to try a different type of medication , or, need to combine something with Pred so you can use it at a dose you body can tolerate while also treating the GCA effectively .
You can , of course , also have Fibro , or other Neuropathy , at the same time as Steroid Myopathy too , I don't say this is scare you , I know you are already feeling the mental burden of it all , but think of having more information as a way to help you explain things in your head , you have things affecting you that you could find some answers too and in time can be treated in a way that all your pain issues will reduce.
It's just the fact with nerve issues , a few can be happening on a mild , non life threatening level at once , especially if you suffered from any frequent or unexplained nerve , muscle or head pain , or anxiety and concentration issues for years before the GCA diagnosis that affected what you did but you did not know the cause . By knowing which issues are present you and your Doctor's can create a pain and symptoms management programme if both drugs and lifestyle changes specific to your individual needs .
Getting to grips with them , if they are there, at least gets you some medical help and shows you which life style / activity changes may make day to day life easier for you.
That , in itself , cures at least half of the anxiety issues created by Stress and made worse by uncontrolled pain .
You won't , I will warn you though , if you have this issues at the same time as GCA/ PMR , be 100% pain free while recovering , each condition gives a little poke in the eye to each other each day no matter what you do or take , but getting any other issue diagnosed and helping that will at least make your pain manageable ( below a count of 3) on a daily basis and help you know how to reduce the pain flaring up beyond discomfort into unbearable.
If you need more advice or have any other questions feel free to send me a private message , I'm happy to help , just press my name at the top of this reply , it will take you to my profile page.
From there you can either follow me if you might want to message me more regularly , so I'm easy to find on your followed list , or just press the word message in the right hand corner of the main photo image and go from there.
Take care , and use some deep breathing or your favoured relaxation techniques , they do help in the meantime while you get things sorted out. xx
The depth of the love we have for a son makes us so vulnerable- on their behalf and our own. No wonder our body as a whole responds when things go wrong. I love your awareness of all the things around you that make life worth living. Not only pretty amazing to have such warm and beautiful distractions but so helpful in getting a fresh perspective. You sound resilient - you will undoubtedly win through this. 🌺
I can only reiterate my comment before: take a nap BEFORE you are forced to crash. It does work!
Relapses in the first 18 months of GCA are common, mostly due to having reduced too far - add in stress and it is more likley. It doesn't matter what you do - you won't manage for long on a dose that is too low anyway. Add stress ...
One of my doctors supports the role of stress in GCA flares, and the other totally passionately discounts any notion that emotional stress can cause a flare. Isn't this an interesting difference in medical opinion?
I don't understand why doctors aren't flocking to this site to learn about GCA/PMR . They need information, they know they need knowledge about treating these conditions; why the unwillingness to sit down and do some valuable reading?
Because many consider we are only patients and have no medical knowledge (no medical degrees possibly but a fair bit of experience at reading medical and science papers...). Some express the opinion that their patients should avoid online forums - they are just for people to whinge ...
They don't listen to the patient sitting opposite them in the room. Though when it comes to the forums to be fair they probably don't have time.
It isn't an interesting difference of opinion per se , the one whom discounts the relationship of stress and increased flare activity is just an idiot.
At least with comments like that you know which doctor is better relied upon for advice and you may want to double check the recommendations of the other medical moron first as he is clearly showing a lack of knowledge.
Stress as a trigger for disease activity to all forms of chronic autoinflammatory and Autoimmune conditions is one of triggers at the top of the list , and has had considerable professional backing , as well as being at the centre of numerous well funded pieces of ongoing research.
Really don't think the majority of medical professionals would have , " Are you undergoing any form of stress?" as a go to first question unless they know stress can be the initial trigger for increased disease activity and acute conditions unless they could back that argument up.
Hi, I had two relapses in the first 2 years, then everything seemed to pick up. In year three my Dr. said stay on 5mg for 6 months before you try reducing again and it worked, I began to feel well and I have now made it down to 3mg (after 3 years of GCA) even my adrenals seem to be coming back. Can you discuss finding the lowest dose that keeps you safe from a flare and then staying on it for 6 months to let your mind and body recover before reducing further. it can save steroids in the long run.
I will talk to the Doctor about this. Based on previous conversations with him, I think he'll think this reasonable. Thanks for sharing your GCA experience.
So sorry to hear of your woes Blurry62. I had a terrible two weeks the end of April while tapering to 8.5. This included the added stress of family life, leaving me in pain and eventually causing a return to a higher dose to get back on track.
I believe this that these conditions are stress related. If not, why do they give you a flush of high dose hydra pred (for lack of the medical term), before and after major surgery. Our body responds to all types of stress and trauma by naturally releasing cortisol to combat it. Now our adrenal systems are shut down essentially while the daily dose of pred we take, takes over that role. It begs the question, should we take a small amount of extra pred when life’s stresses happen? This is just my theory, and I welcome comments and corrections.
I feel for your upheaval with your son. I’ve lived a similar experience, and now on the pred long term, I’m afraid one side effect for me is that is seem to feel things more deeply (that includes joy and sadness). I truly hope you can heal in all aspects... your physical and mental health. Glad to hear your doc is on board, and that you are here with us.
It certainly adds weight to the argument that , although you don't increase your dose " just in case " some form of physical or mental stress might cause a flare , we do recommend that you plan your taper according to what is going on in your body , and your life , rather than sticking to a hyper strict timetables .
It's never recommended to start a new taper when suffering from another infection , injury or a flare up in other pre existing health conditions you have . Nor is it recommended to start a new taper just before or at the same time as a big life event involving alot of physical or potentially stressful mental activity .
Both these are physical and mental stressors , which add to the burden on the body at a time when the body is already suffering from the physical stress of coping with the changes in drug dosage while tapering , and therefore making the body more sensitive to all forms of change around it which could cause a flare or failure in tapering .
Your body is already under stress and weakened , it can't cope with too many changes at once without reacting to those stressors with an increase in pain , PMR or non PMR , which in itself prevents you from continuing to reduce the steroids .
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