First, thank you so much for everyone's posts. You have no idea how much I learn and take comfort from all of you. I am still a relative newbie - diagnosed after a year in January and have been on 35-40mg. prednisone for over 5 months now.
I have also had to take percocet to help keep the pain down. The higher the prednisone - 40mg., the less pain help and vice versa. Still at 40mg I have to take a few a day. Oddly, the pain help is useless unless I am on prednisone.
My dilemma: it doesn't appear that doctors I have found in the US are that educated on how to dose, so I chose the 40mg (vs the normal 60-80 to start on GCA) because I struggle so much with the steriod side effects. They are really unbelievable and unrelenting each day. When I go down to 37.5 or 35mg. (you'd think that wouldn't be such a big deal as it's in the 'no less than 10% principle' the pain is back considerably.
I have now gone back up to 40mg. and struggle mightily with intense side effects.
Many of you have said the steriods just reduce the inflammation and doesn't cure anything. So, I have been taking the track of taking the minimum steriod I need to get by each day and supplementing with the percocet.
So, my questions are:
- Am I on a strong enough dose to make progress on remitting this disease as quickly as possible? Or, it doesn't really matter what dose you are on as long as you can withstand the pain?
- By staying at 40mg. and trying to decrease very slowly, am I just flaring and causing more problems?
- Isn't nearly 6 months at 40 - odd mgs. a long time and I should be tapering considerably more by now?
Thank you so much for any advice.
Kelly
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kellykel
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You will receive replies from our medically minded experts I'm sure. It occurs to me to say though, if you are in that much pain and discomfort on your current dose it is possible that there is another condition present as well. Also, there is no virtue in taking Prednisalone and still suffering so much.If you have PMR then the Pred is supposed to control the inflammation, if you don't take enough then you have All the downside of Pred side effects and none of the benefits. It is important to completely control the inflammation because it is harmful to your body - it is not a matter of being brave. Oh dear, I wish you were in better medical hands! This is a massive responsibility for you alone.
What are the side effects that you struggle so much with?
Some of them can be helped as we have variously found out on here.
It's a trade off really blessed relief and side effects or limping along like you are.
Where are you in the U.S.? Some of your compatriots have travelled to find a good Rheumie.
Apologies you have GCA! It is even more vital that you receive proper care. As PMRpro says you are risking your precious eyesight allowing the inflammation to go unchecked!
"Isn't nearly 6 months at 40 - odd mgs. a long time "
It is - and I would suspect that either they simply didn't start you on a high enough dose or this possibly isn't GCA since you find percocet works - most people find other painkillers, even opiods don't help.. How were you diagnosed? Have you had a positive biopsy or ultrasound?
The reason for starting at the higher doses is to get the inflammation under control quickly to reduce the risk of visual loss. It has no effect (as far as is known) on the disease process in GCA - it is controlling the inflammation in the meantime until the disease process burns out. First you have to clear out the existing inflammation and then you find the dose that manages the new daily dose of inflammatory substances. The importance of clearing out that existing inflammation can't be emphasised enough - it creates a baseline that is far lower than yours probably is. As an analogy - think of a river bed that is silted up, extra water coming down will make it overflow easily. Clear out the silt and the same amount of extra water remains in the river.
First you use a high dose to get symptoms under control - and then you reduce. I do appreciate the side effects, they are horrible and can make life a misery - but possibly had you taken the higher dose at first you might have got to a lower dose by now. As you say, 6 months is a long time.
However - since you are in the USA there is a possible answer: tocilizumab has now been approved for use in GCA and you may be able to access that. But I think you may also need a new and more competent doctor.
PRMpro & DorsetLady, I read every one of both of your posts to everyone's questions. You two in particular have kept me going through some very very dark days. I am so incredibly grateful you both replied to me.
My apologies, but this is long as I really want the two of you to weigh in if you would. I am absolutely in complete despair and confusion. I want to make sure I am doing everything I can to help the disease into remission. It sounds like you both recommend going up on prednisone. I loved the riverbed analogy. That made a lot of sense.
After never being sick in 53 years, super active and sporty, worked full-time for 30 years, raised beautiful children, I have been literally disabled from pain and fatigue for a year after a bad flu-like event.
This is a long email, but I cannot tell you how anxious I am to hear particularly from you two what you think as I need to make a decision about what to do now.
So, thank you in advance for the time it will take you two to read this and to respond. Please know my deep gratitude for all you two do every day on this Board.
I break this email into:
1. Do you think it sounds like I have GCA? I lay out what happened, that I have been on prednisone on and off and never "off" enough for a potentially valid biopsy.
2. The fact that Prednisone is the only thing that has ever touched the pain to the level where I am out of bed and human again. It is the workhorse of my pain management. Without it, the percocet does nothing. With it, the percocet gets the pain down another couple of levels.
2. The side effects of Prednisone (DorsetLady - thank you for asking. You have helped already a great deal with some of the side effects from your new person articles and your personal responses. Thank you.)
3. Lastly, it is no longer the pain I am having trouble with managing. I can definitely now handle the whole day with the pain. It is that I still am so incredibly disabled. Tired, feel just so sick. I walk slow. I have dizziness and sever muscle fatigue. I feel like a ghost of a person.
I guess I am wondering:
Well, this is just how it is until this thing goes into remission. I am just going to constantly feel sick, sluggish and hobble through the day with severe fatigue and prednisone side effects. OR, I am not taking enough prednisone to relief the inflammation and therefore reduce the intense fatigue. Or, does fatigue just come with the package regardless of the level of prednisone.
Ok - first things first. Do you think I have GCA?
I am highly triggered when I hear that maybe I don't have GCA as I did not have a biopsy or ultrasound. The reason is I had already been on too much prednisone on and off by the time I asked someone to check out GCA. Why was I on prednisone so soon? When the slow, demoralizing medical journey to try and figure out what I might have began, they took all kinds of scans and found two brain anneurysms at my temporal lobe. So, I had brain surgery 2 months after the pain started. They put me on 40 mg. tapered doses of prednisone for the brain swelling and healing for several weeks.
Then, since the surgery did nothing for the pain symptoms, they thought it was a New Daily Persistent Headache. I then spent 3 months on different migraine medications. Nothing worked. No abortive medication like Imitrex or 2 rounds of 32 shots of botox in my head, or steriod injections in my neck worked. Pain was excruciating and I just layed in bed.
As I began to fear for my mental state, my Dad would take me to Urgent Care every 3 weeks and I would beg for prednisone. They would usually give me a 7 day dose every 3 weeks or so. So, I had been on prednisone by the time I even heard the words Giant Cell Arteritis.
I only found that disease when I started doing my own research after deciding if I don't do something, I wasn't sure I was going to make it. I had been seeing two leading neurologists who both said - "we have never seen anything this bad, but we can't find anything wrong with you (your sed rates are fine, your bloods fine, your scans are fine) and we don't know what else to do for you." I was told told by a rheumy that I should exercise more vigorously and work on my emotional issues and there was no way I had GCA as I was too young. My Mother and I looked at him in shock. I would be happy to exercise more I said, if I could actually move faster than a slug. Could he help me with that first? (Needless to say, it was not a fruitful visit).
I felt like a hospice patient. A family friend had PMR and encouraged me to look at the symptoms of GCA. They seemed to match.
Prednisone has allowed me to get out of my bed. I am still very slow, incredible muscle fatigue, etc., but I am no longer in unending, life questioning pain because of this medication. If I went off it, my pain would be back at an 8 and I would be back considering how to live through the day.
Here are my GCA symptoms without Prednisone. I would like your opinion if this sounds like GCA to you. It does to me:
1. Vice like, painful grip all around head and forehead.
2. Excruciating, constant, unremitting pain at a level 7-9 every day, all day. With 40 mg. prednisone, the pain goes down to a 5-6. With percocet, I can get it to a 3-4.
3. Temporal lobe intense soreness. I had to buy very expensive eyeglasses that were the lightest material possible as wearing my glasses was untenable behind my ears.
3. Painful, sore patches on my scalp.
4. Weird, blurry vision. That was on and off and now gone.
5. Pain down my arms to my thumb.
6. Jaw Claudication - without prednisone, I could barely chew after 3pm.
So, those are my symptoms. Unfortunately, since I had been on prednisone on and off, they said a biopsy might be negative. I was afraid to get a negative biopsy because I thought then no one would ever give me prednisone. Literally, I knew if I was going to stay alive (mentally keep in the game) I needed the prednisone.
Prednisone is the ONLY thing that greatly affects the pain. Without it, no pain medication works at all. With it, I get some relief from percocet. Prednisone allows me to get up - take a shower, go to the store or prepare meals. Keep the house neat. I can also walk 15-30 minutes a day.
Now, I am open as heck to not having GCA, but what the heck else could it be? I am seeing a lyme specialist as well, but all my tests are negative and an intense round of 3 antibiotics did nothing.
I am at despair and utter confusion level. Not because the pain isn't somewhat managed, but because I am still so darn disabled. I wake to pain, get it somewhat managed with percocet and then deal all day with very bad fatigue and flu-like, sick symptoms.
DorsetLady - I could so relate to your saying you were just in shock at this whole thing and just did as told. I can't believe you lost sight. I am so incredibly sorry. You have been through so much.
Symptoms from prednisone (or the disease - who knows?)
- Severe bloating and pressure from pelvis to top of head. I feel like a tight balloon.
- Severe muscle fatigue. Exhausted. Everything feels like a huge effort to move my body.
- Thrush is under control from medication.
- Heartburn is managed somewhat by Nexium.
- Severe depression and anxiety - was recently started on Prozac.
- Can't sleep - for months. Prozac has been helping with that.
- Weight gain has now stopped and is decreasing. I have no added salt, eat no processed foods. I do binge on shortbread cookies occasionally.
- Irritation and 'roid' rage - normally, I am very easy going. Every day now I am just a crabby annoyed middle aged woman. Ugh.
- Buzzing throughout body through the evening.
- Bladder pain. Yeast infections.
- Budding ulcer
So, bottom line, is this just the way it is? I am going to feel super sick for as many years as it takes to have this go into remission? If so, that's fine, I will deal with it. I just want to make sure I am doing everything I can to help myself.
There is a list of recommended places to look. I don't know if any are an option for you?
All that you describe makes me think that the most obvious answer is GCA - and if pred is the only thing that helps the pain then really - it is pred you need until proven otherwise. Opiods aren't particularly advisable either!!!
Some of what you ascribe to pred could also be the PMR/?GCA - depressive mood is part of PMR and a listed symptom, the muscle fatigue is too. So is roid rage - I am actually far more level in mood ON pred than I was with untreated PMR. Being unable to move/exercise doesn't help weight-gain either, I put on as much weight that way as I did on one particular form of steroid. I've lost it all again - while still on pred, it can be done. The flu-ey feeling is also typical of GCA, also a listed symptom.
Well managed GCA isn't as bad as what you describe you are suffering at present. The biopsy might not have shown anything anyway - when it is positive it is 100% certain it is GCA, when it is negative all it means is they didn't find what they were looking for and there are many reasons for that. Once you have been on pred the chances of finding anything are reduced though.
So, on balance, I think you need a rheumatologist who isn't hide bound by age - and anyway, over 50 is in the most recent recommendations which unfortunately are still to be published. There are documented cases in under 50s - the one I quote repeatedly is a man of 37 who had a stroke - and at autopsy was found to have had GCA. The pathologist knows it ALL!!!
If you google "age for GCA" you will get a load of links where every single one says "over 50". The rheumy was totally out of touch and also out of order to suggest even obliquely that it was psychosomatic. The diagnosis of GCA is a clinical one - the blood tests and biopsy should be playing a supporting role anyway. He obviously has no clinical skills.
Have a look at that other thread - and then look for a rheumy who WILL help. Whether it is GCA or something else, if pred works - that is a start.
Thank you for the swift response. It all sounds very logical and wise. I will get on that link and list. Thank you for taking the time to help me this morning and last night. I can't tell you how much I appreciate your input.
PRMpro, another question: my Neurologist says tocill. Is a very serious and dangerous drug.
Before he would put me on it, he would require a positive biopsy. I wotneed to go off steroids for six excruciating months to potentially get a good read. Do you have thoughts on that? He says same for methotrexate-he said they both nuke your body and then we hope the body recovers. Apparently they were initially used for severe cancer patients.
Thanks for your opinion.
Meanwhile, having no idea what amount to increase, I will go with the 10% rule and go up 5mg to 45 mg. And then what two weeks. If you or Dorsetlady are able to say "do a bit more" without getting in trouble, I would appreciate it.
He's talking absolute baloney! My thoughts? Time to get a rheumatology doctor who has a vague idea what they are talking about. For a start - if there is any chance you have GCA, taking you off pred for 6 months would put you at a pretty high risk of visual loss. Negligence comes to mind...
Tocilizumab is a monoclonal antibody, it was developed for treating rheumatoid arthritis and other inflammatory arthritides. It is NOT a chemotherapy agent nor is it cytotoxic. It is used routinely for RA and the side effect profile is acceptable.
Methotrexate is used as chemotherapy in high doses but at far lower doses it is also used as a DMARD in rheumatoid arthritis and has been for a very long time - since the early 1970s.
"Methotrexate (MTX) is now the most popular drug worldwide for the treatment of rheumatoid arthritis. Low-dose, weekly MTX (10 to 25 mg/wk) used as either monotherapy or in combination with other drugs has a superior efficacy profile as defined in placebo-controlled trials and comparable efficacy to other drugs including anti-TNF therapy. At 1 year, one third of patients on MTX have no radiographic progression and even greater effects are seen when combined with targeted biological therapies. MTX is well tolerated; gastrointestinal toxicity is the most common toxicity with rarely bone marrow, lung, or liver toxicity. MTX therapy has been a major advance in the treatment of rheumatoid arthritis and is now the cornerstone of therapy."
I know neurologists work in different worlds to rheumatologists but for one to come out with that sort of rubbish makes me wonder about their training...
Ok, wow. I am so ignorant of this stuff. Thank you. I will look for a new doctor. Thanks again for all your information. I feel more clear about next steps.
Like the others would say you are not on enough Pred, or maybe your body is not good at getting the full benefit of it. At 5months in you shouldn't still be in pain, but as PMRPro says your initial dose of 40mg was probably not enough to get a grip of the initial inflammation- so therefore there's a lot still there.
Personally I was started at 80mg (18 months undiagnosed- already lost of right eye), after 2 weeks reduced to 60mg, stayed there a month -down to 55mg, another month to 50mg, another month to 40mg. So 5 months, although I was at same dose as you I had taken considerably more Pred, and certainly was in no pain.
Yes Pred does produce some nasty side effects, you don't say what is worst for you, but in my case I knew I had to take large doses to preserve my other eye, plus I think early days I was in shock over the whole scenario I just went with it.
As said, you need to speak to a doctor who has more idea of GCA, but personally I would say - you're not taking enough Pred (sorry), and whilst that's the case you are not getting the benefit of the drug but you are getting the side effects - a lose, lose situation.
If you let us know the side effects that are bothering you, we may be able to make suggestions of how to cope with them.
DorsetLady, you don't know this, but you have literally kept me going one more day. And you have done his many, many days. You definitely have kept this one individual alive with hope, so I wanted you to know that. You continue to do that every day as I read your posts and find some solace that someone like you is out there. I didn't know how to respond to both you and PRMpro, so replied to his post but was meant for both of you to read.
Would you mind reading my reply to PRMpro. I am very anxious for your opinion.
Thank you so much for all you do for everyone every day. What you went through is horrendous. You lost your sight. I can't believe what you have endured. And yet, you give back to each of us every day. You are an Angel.
As I've said many times I am not medically trained so I can't say what it is if it's not GCA, however I know what my symptoms with GCA were - and they're mighty similar to yours!
In answer to your questions -
1. Does it sound like GCA - yes
2. Pred the only thing that touches the pain - GCA? - yes
3. Dizziness, muscle fatigue - could be GCA, or Pred, most likely combination of both.
4. If you take enough Pred, inflammation controlled, therefore pain and fatigue lessen - not necessarily 100% but enough to live life again.
5. You don't have to have positive biopsy to have GCA, many don't for a variety of reasons.
6. Can't comment on previous treatment.
7. No way are you too young, and vigorous exercise is the last thing you should do - Rheumy want a good kick in the pants for suggesting that!
8. Specific symptoms - I had all except for blurry vision )until the last few days prior to sight loss/diagnosis) and pain down my arms (shoulders only)
9. Other symptoms/side effects - majority from Pred, but head pressure and severe muscle fatigue is also likely to be uncontrolled inflammation. Sometimes it's difficult to tell what symptom/pain is the illness and what the remedy!
10. The bottom line is - no you shouldn't feel super sick for the duration. The underlying illness will be there, but sufficient Pred - and that varies from person to person, almost day to day sometimes depending on outside influences- should control the inflammation caused by the GCA. When that is under control the other symptoms, fatigue, pains etc recede accordingly.
Because you were undiagnosed for almost the same time as me, I would suggest that many of the cells making up the blood vessel walls were quite badly inflamed, and therefore a starting dose of 40mg was nowhere enough to get them reduced to normal size. I understand that because you'd been on it off and on for some time you didn't want to go higher, but I think that's maybe where the problem lies.
As I said previously, at the moment you are getting the worst of both worlds - all the side effects, but none of the benefits of Pred.
As PMRpro said, you need to find a Rheumy who is more switched on than the one you saw previously. And much as you probably don't want to, and we can't advise you to, is seriously think about adjusting your dose. You are highly unlikely to increase the side effects you already have - but you may reduce the GCA symptoms.
Thank you. That settles it. 80 mg for 2 months or 60 mg do you think? Perhaps a ramp to 50 for a week, see what happens? Then 60...then 80 over three weeks? Or jump to 80 now ?
I can't tell you what to do, I'm not medically trained, and we're not allowed to, however, I would suggest 80mg is a bit too high, perhaps a smaller increase would be wise to start with, and you need to give it a couple of weeks to see if any improvement.
Sorry can't be more direct, but I'll get my knuckles wrapped if I do! And quite rightly so.
No real need to do 80mg for 2 months - what they usually do is the very high doses for as long as it takes to get the symptoms under control and the blood markers on the way down. The more usual starting dose is 60mg for a month. This is a good paper providing advice for GPs:
I can not provide advice as I am new on this journey. I too was diagnosed with GCA and I am currently on 60 mg of prednisone. I can only share with you that I could of written the list of symptoms you are experiencing. I am 54 and raised 3 beautiful women. Yesterday, was my granddaughters 2nd birthday. I tried to pace myself due to extrmeme fatigue and rested until 1:30 pm. I arrived at the party at 2:45 and hit the wall. I was exhausted just from getting up and driving. I didn't even shower!
I slept for over 2 hours in this little bunk bed with over 10 kids screaming and running in and out of the room. I thought I had slept for just a half hour. I felt so bad. Not a very good image of a grand mom
My pain levels are very high without the prednisone. If somehow they took the prednisone away from me, I would go to the streets to buy some. It gave me a new outlook on folks who are in extreme pain and have no access to medication.
I too supplement occasionally with Percocet, yet that is from pain from a previous surgery. It does seem to help just a little on the GCA and PMR pain. Really not much as I think it is more wishful thinking. My legs don't want to work all the time and I hate steps as my knees just give out. I tried to crochet yet shoulders and arms hurt. Horrible headaches, etc. I too feel like a ghost of a person, and wonder if I will have my life back.
I did not have the biopsy performed as the treatment would of been the same if it was positive or negative. That lingering doubt can be nasty especially as most doctors would of preferred the physical evidence. Personally, I don't need it. The prednisone works and at 60 mg I no longer have what I called the black rainfall in my right eye. It took well over 6 weeks for that to reside as a primary symptom. At times, I still get the headaches and black spots, yet it is much better.
I started at 80 mg and that was a really good dose for me. I have been tempted to up the dose in bad days, like yesterday. However, I do believe I am making very slow progress. The disease has been working on my body for a long time. Who knows how long? I have felt bad for the last two years and was undiagnosed. I have come to realize, not necessarily accept fully, that this is a journey, not a short trip.
Thanks to this forum, we are not in this journey alone. I was originally scheduled to start methotrexate, yet due to the list of side effects, my husband and I decided to wait. Fortunately during that time a new drug was approved by the FDA. I am starting the new drug Actermra (toxi) next Monday. I was going to wait until after our family reunion in July yet after connecting with some other patients and hearing their positive stories on gaining some relief, I decided to start now.
I am sorry you are not feeling so well and remember the prednisone can cause depression and being ill is enough already to cause depression.
Like PMRPro and DorsetLady advised, taking a higher dose of prednisone might be worthwhile.
I am in the US and happy to share my experience with you. Learning to pace and say "no" has been tough for me. Yet thanks to the stories shared in this forum, I know there is a light at the end of the tunnel.
Thanks, so good to meet you. I am so sorry you too are slugging through this nightmare. I would love to talk more with you. I don't quite know how to go off-line to do that, so maybe you can direct me?
I am so happy to meet someone like me. This is a lonely confusing time.
To private message someone click on their name next to the avatar in their post. That brings up their profile page with their info (please folks, fill it out with where you live, at least the country!) and their posts/replies. And at the top right is a box with "message". You can have group chats by sending the message to more than one person - just keep adding their names
Kelly, you haven't replied where you are located in the U.S. I am in Pennsylvania and have a wonderful Neuro-ophthalmologist at Wills Eye Hospital in Philadelphia, Dr Mark Moster, who diagnosed my GCA in January 2015. My Neuro originally sent me to Wills Eye. Dr Moster also has offices in Blackwood, NJ and Elkins Park, PA. I did have the biopsy and was put on 60mg. of prednisone. Within two days, the pain was almost gone. I did have my ups and downs. And of course, I went through many side effects of the prednisone. I do go for blood work every three weeks to check sed rate, CRP and platelets.
I was down to 2mg in March but due to high CRP and had to go back to 10mg. Am slowly tapering and down to 5mg.
I do have a rheumatologist who is good with GCA but Dr Moster is advising me on the tapering at this time.
I hope you find a doctor who can diagnose your problem.
Dear Kelly, you do seem to have had a rough time. As the others have said you may have been better off on a high dose initially to get the inflammation under control and then you could have done a smoother reduction. Also it looks like the Percocet is acting as pain relief for something else. It is an excellent opiod and pretty strong, not the sort of drug you want to take all the time, but just for a day or two. Hope things improve.
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problems with starting dose of prednisone. 
Pred dose question (GCA)
On prednisone taper
