So here is the thing going through my mind- what if it is something else? I was started on 20 mg pred for 5 days then increased to 60 mg for last 16 days. Double Biopsies done day 11 (16 if you include the 20 mg) I have had a headache every single day. It does come and go and is better at the end of the day. But Tinnitus persists- I have a continuous radiator going off in my head since before any prednisone.
The following all ended when put on 60 mg or greatly reduced at 20mg.
Arm pain
Shoulder pain
Waking at 4am in pain
Hip pain
Not being able to lift legs
Not being able to put on socks
Not being able to lift arms
Weight loss has slowed☹️
Not being able to get out of a chair without something to grab on to
Had 2 rounds of bloodwork one in August and again in September they were bothered elevated Esr 78 then 95 and C-Reactive - 2.4 then 3.1(normal .0-.5) and I am 60
I saw the GP This past Friday she is leaving all up to Rheumy who I see this Wednesday next. Go to ophthalmologist on Tuesday.
So not sure if I am just paranoid or just still getting used to all this.
Thoughts?
Oh also this all started mid July 2018....
Thoughts?? I've got so many I can't even think right now.
For now I'll just say, my latest ESR is 90 (much like your's), I too have an appointment for possible eye surgery on Tues..... Lot's of double vision right now!
And lastly, I too have bad headaches daily....
I need to process your post before I respond further but, thinking of you kid....and sending you hugs and good thoughts😘💕
Sure sounds like what I have gone through (minus GCA). 20mg was a miracle, however, things got worse and I went to 60. Have bounced up and down and at 10 now and should be on 20. Am tolerating some discomfort.
My rheumatologist visit is coming up. The doctor is o.k. with the level of prednisone I think I'm needing. My blood work is always elevated - no matter what.
If you have regained some mobility through the prednisone treatment - that is so good!
Thankful you are getting to see the Opthalmologist.
This disease has a 'getting used to' curve. I'm at 22 months and have not adjusted. My body keeps coming up with new challenges that require different doctors.
Hope you get some resolution soon and that you are able to keep your body mobile. Once one has experienced the PMR 'body freeze' - and then the relief - it cannot be forgotten. Prednisone is my friend.
Thinking of you,
MariGrace
Hi MariGrace, boy what you said about different doc's is sooo "right on"!
Started with my primary...from there went to pulmonologist--to Reuhmatologist--to cardiologist, to neurologist-opthamologis--to (still unseen) hematologist!!
Wfewww...talk about whiplash! Who Knew??
So many daily changes/challenges! Thank heavens for this forum and all these great folks!
I did not have GCA, but follow this forum for 3 years and learned from other posters - I have to agree with your doctor's diagnose, based on your symptoms. The fact that biopsy was negative does not mean much. Only positive biopsy is conclusive. Negative means that they have missed the area where GCA. Also being on prednisone may give negative biopsy.
Since you risk losing sight from GCA, I would suggest to follow /stay on high pred dose. It takes time and everyone responds differently, so please be patient. Usually after 4-6 weeks of high dose, taper starts; hopefully you don't suffer too much from side effects of prednisone in a mean time.
Thanks Nick- yes just trying to reconcile it all in my mind...3 weeks ago I never heard of PMR or GCA. I guess I am still in the denial stage. Plus still working full time and trying to figure out what my new reality is going to look like.
I will definitely be following the advice of the Rheumy I guess I just want to make sure there was not something else it could be. Will keep all posted-
Thanks Lynda and MariGrace for your kind words!
I hope everyone had a great night sleep tonight and good news at all appoinythis week!
Best
//mk
I am coming in late on this but do not worry about the biopsy being negative. Mine was too. If symptoms are lessened keep up with prednisone. Thank goodness you are on Prednisone and your eyes are being checked. GCA with the headaches is so painful, and can potentially be very dangerous. If persists maybe an neurological MRI could be called for. My doctor did that to see if possibly something else was wrong with me. We discovered I had had a small stroke. Do all the research you can. I am taking an antiviral based on the theory that the zoster virus might be involved. This is not accepted treatment by all rheumatologists, but mine went with it.
Thank you Kdemers. I am anxious to hear next steps. I have read about the zoster connection also. I have not had the vaccine yet and apparently there is a new “safe” vaccine available. GP has a note in to the Rheumy depending on what the next protocol is.
All the best for a good nights sleep!
I'm with you MKS...until June this year, I'd never heard of pmr/gca either.
When my Reuhmatologist informed me I had pmr, I was only concerned with the word 'steroid' and KNEW I was headed down a dark path! Afterall, aren't steroids what gets guys banned from baseball, builds up bodybuilders to grotesque muscles, and cause mammoth "road rage"?? I sure didn't want anything to do with all that!!
Unfortunately (or fortunately) the prednisone miraculously worked and now has become part of my journey.
I too, am still in a slight state of denial.
So I get you completely.
Let's just all keep on being there for one another!💕
Totally different sort of "steroid" Lynda - pred is a synthetic corticosteroid, similar to the cortisol secreted by the cortex (the middle) of the adrenal glands and which is essential to life. Body-builders use anabolic steroids - synthetic versions of testosterone, also a natural and necessary substance,
But like so many other things the devil is in the detail: the dose. Small amounts of many things are good - excessive amounts are not. And it doesn't matter whether they are natural or synthetic - sometimes they are good things.
The biopsy result being negative is fairly meaningless - it only means they didn't find what they were looking for but there are many reasons for that, not least that GCA isn't affecting the temporal artery or that the fact it occurs irregularly means there are areas of tissue that are perfectly normal between the bad bits. Like there being good road surfaces between patches of potholes! The only reason the temporal artery is used is that it is easily accessible and you can manage without it. GCA affecting the occipital area is a far greater risk but there is no way to image or biopsy that, and the ways of imaging GCA affecting arteries in the chest area can't show what sort of inflammation it is - whether there are giant cells or not. Other drugs are used in other forms of vasculitis but they aren't as effective in GCA.
So GCA (and PMR) remain a clinical diagnosis: based on the signs and symptoms, clinical history and response to pred. What you describe is typical - if there is such a thing - but your symptoms coincide with what loads of people experience in GCA.
My own suspicion is that you need more - if it isn't enough to thoroughly clear out the existing inflammation then even a small amount being created each day takes you into the symptomatic level. Many rheumies support the idea of starting with a pulse therapy - 3 days of very high dose infusions of methyl pred, sometimes 100mg/day or more, and then switching to high dose oral pred, sometimes starting with a few days of 80mg. If you haven't used enough pred the symptoms will persist longer, even if they are reduced. In PMR it doesn't matter as much that it takes a month to get the inflammation under control - but GCA is something else.
Perhaps the bad news is that if the tinnitus is due to the GCA (and it often can be) it may take a long time to improve. I had relatively mild tinnitus with what has always been said to be "just" PMR suggesting the blood flow to the nerves in the ear was compromised (I had jaw claudication) and it took months to disappear. Nerves are notoriously bad at regenerating.
I suspect there is a narrow line between being paranoid and merely being worried - and after just 3 weeks or so you have a long way to go to learn about YOUR personal version of GCA. In the absence of a 100% definitive test for either PMR or GCA you have to accept this is the most likely diagnosis and probably the most urgent to rule out by your response to the right dose of pred.
Thank you Eileen, as usual, great information! That does, indeed, help at least clear one thing up for me.
I won't be so worried now about having to sign up for "Mr. World" competition, or running someone down on the freeway!😁.
just to add to that - prednisone has the opposite effect - it reduces muscle mass and that is why it is very important to walk or do whatever you can to preserve the muscles.
I would just add that I think you are very lucky your medical people are basing your treatment on your symptoms. This is the way it has to be with PMR/GCA. There are people on this forum who have had to reduce their pred drastically based on test results, in the face of increasing symptoms, and suffer greatly, so it seems you are being treated based on best practice. You will always find support here. The early days and weeks are the hardest, but as Eileen says as time goes by you will find the best way to manage your particular version of this incredibly frustrating ailment, and it seems you have the support of knowledgeable doctors.
Thanks so much Lynda for giving me a laugh. I was imagining us all looking like Mr Muscle! Perhaps that is what I really need.
YIKES!...that REALLY makes sense (at least in my case). My body seems to be getting progressively "wobbly"! Not liking it at all! It doesn't even feel like there's EVER been muscles in certain areas...so attractive!!
Lol Ptolemy...I aim to please! I still maintain, laughter is the best medicine!😁💕
Thanks Eileen. Hanging in and reading like a fiend...the support on this site is amazing, must say thank you to all!!
I second that MKS! No wonder I was sooo upset when I was unable to communicate with you all on this forum! So glad the glitches are gone!
You guys have become my cyber family!😁