Suspect Giant Cell Artritis, should I act or wait a day!

Thanks for your reply so many days ago and apologies not replying to you, was in the thick of all this stuff going on. It a pity I didn't pay more attention to your post and look at your list of symptoms, so sorry you have so many! The wheeziness & hoarseness was there for me too but I put it down to being in pain! Also got chest pain and arrhythmia and given the neurologists diagnosis, migraine seems to be what I have which I would never have thought I had! Headaches in general wouldn't have been on my radar only body pain!! Obviously I'm hoping that my biopsy is clear and that I will 'just' be dealing with migraine! Thanks again for your thoughts, I hope you can be well and not suffer too much or too often xx

You haven't been on the high dose for very long so theoretically it shouldn't be too bad - and you are certainly safe from adrenal crisis type problems because - as he said - you are still on 30mg. I imagine he wants to see you without high dose pred and see what happens. You could try going down 10mg at a time every 3 or 4 days maybe - and see how you are with 10mg changes. That'll only take just over a week so you'll be there by the time you see him.

What a ride!  I do hope they've got to the root of the problem and you'll soon be on the mend.  

Thanks as always Eileen for your advice! I'm sure I speak for so many people on this forum, that we trust your advice and knowledge more than we do from our doctors!! I took the 30mg yesterday and for a portion of the day felt ok, but then alot of shoulder, arm & hip pain and weakness kicked in! It did take me by surprise as originally 5mg steroids sorted the pain of PMR for me. I think I'll try the reduction by 10mg every cpl of days as you suggest and will be down to 30 by the time I get a blood test before I see doc and see what he says from there. Thanks again! I read a post you put up earlier about how your life is now with PMR & GCA and I have to say that you're an absolute inspiration, not only as I said before, for your advice and knowledge but also showing how our lives can be living with these conditions. Thank you so much, I appreciate you and your knowledge so much!

Thank you, you're very kind!

But please don't put me above your doctors - I have the lived-in experience and a lot of medical background knowledge but I'm not your doctor. You have to live with them!!!!!

I wonder if splitting your next drop dose might help? However high the morning dose - if you are a 12 hour person in terms of inflammatory effect of pred it will wear off before the 24 hours are up.

The pain and weakness you are currently experiencing MAY be pred withdrawal, not PMR, so give it a few days at 30mg before thinking about putting the pred dose up.

Thanks again Eileen😊 Not so much putting you 'above' my doctors, you've lived it and listened to so many people, that your advice is more pertinent! Chances are my doctors have never taken steroids and maybe never experienced a migraine, so the old adage of 'walk on my shoes' definitely applies to you and not them!!

I decided you just go with the drop till the blood test tmrw and then will try splitting the dose, think you're right there (also 😀 as it lasts about the 12 hours and then I feel OK, so mayb half and half would be easier to deal with! Thanks again xx

Thanks FlipDover Aust, think you may be right, the pain was so like the PMR pain but i do think the drop in steroids causing all the problems. Hopefully it'll all settle as time goes on.

Hi there...I get migraine symptoms similar to your experience and have been on treatment now for 3 years. This kind of migraine syndrome is common to vasculitis. GCA is a form of vasculitis too. I am following your post and wondering if this is the cause. I can have clear MRI s and bloodwork and yet there is still an inflammatory process going on. Did you have a diagnosis of GCA? Or is that just being confirmed now with biopsy?

Lots of people do 2/3 in the morning and the rest evening-ish. But it is all trial and error to find which suits you best.

Hi Margaret22116, gosh sorry to hear you're suffering like that for 3 years! Yes, I was diagnosed with GCA based on having Polymylgia and the headache symptoms I presented with and put on 60mg steroids, but continued to have headaches and then 2 wks in had a massive headache, so along with all the other investigations in hosp, they decided to do the biopsy, so am waiting for the result of that to see where it'll all go. I'm having a blood test tmrw so results of that will coincide with appt with Rheum doc and biopsy results. What I find so strange is that I would never have said I suffered from migraine, so getting that diagnoses is odd for me! What treatment are you on for your migraines?

Hi. Yes my migraine developed after years of other symptoms. I have Behcet's a different form of vasculitis.

I use interferon and mycophenolate for disease control. That stopped the migraine for me. Still using that for treatment. Absolutely nothing would get rid of that migraine for me.

It is interesting to me how you describe your symptoms. Very similar to mine. My doc always ruled out GCA. I thought symptoms so similar and asked directly about it. Do you mind if I ask what age group you are in. I am 53 and was told GCA only affects older people than me.

The average age is older than fifty, but the docs seem to forget that averages are calculated by including both younger and older individuals, so 50 is by no means too young - you're just averaging out someone who is 70+ at onset!

I wonder how many people with PMR or GCA have also been migraine sufferers?

Yes it is interesting. I had exactly the same sort of pain in ear up the side of head balance issues upoer back neck pain and pain in my hips.

I asked 2 different consultants about GCA and they always point blank ruled ot put. The treatment I have works so that is important thing I suppose. But O always relapse if treatment stops.

Why did they rule it out? It is beginning to be realised that ear/hearing problems are part of GCA - and frankly, if neck and cerebral arteries are affected - why shouldn't they be? 

I just don't even know to be honest i asked my former consultant who said it would show in blood tests. I have raised inflammatory markers sometimes but not always.but symptoms nevertheless.

Ah well, bless him, he's wrong! The only blood tests are the inflammatory markers and up to 20% of patients with GCA or PMR have persistently normal levels or only very slightly raised ones. And as I said somewhere else today already: my normal is about 5 - if it got to 20 it would be pretty high. But 20 is the top end of normal range...

 

Well this os al so confusing. I have a history of those kind of symptoms back into childhood. Hospitalised for 9 months suspected TB. Then i get remission from about 7 until early 20.s. certaim symptoms start up then and in 40s diagnosed with Behcet's.

Then crazy migraine starts. Unrelenting. The I develop a lot of upper body pain. Hip pain and mid back pain.

Medication controls it but if I stop it it begins again. Also have hair loss going on. Unexplained.

Very "complex autoimmune disorder" isn't it! As one of my friends on LupusUK says - you need a true detective doctor! She was diagnosed as a child as having lupus - but her mother never told her (why, I have no idea!). They found out when she was in her 50s - so now they are trying to catch up on all the damage that has been going on. Oh joy...

Oh no, what a nightmare for your friend!! Yes it's finding a doctor who has the interest on playing detective, not too many do!

Yes very complex. Have you ever in your experience come across anyone who successfully used interferon to control symptoms of GCA?

I'm 54!! I have to say my Rheum doc didn't mention age or raised inflamatory markers, although my own doctor did and dismissed the thought of GCA! Basically left me feeling as I was and didn't suggest anything. As far as she is concerned tho she has signed me over to this Rheumatology doctor so she doesn't have to make any calls now, and I had to fight with her to refer me! Reaction from him of my many issues is polar opposite to hers. So maybe you're in the same position. Maybe you should get another opinion. So strange that your pain was a copy of mine, down the face around the back of the head etc. and really a wonder why a biopsy wouldn't have been mooted. Although I have been warned that it can yield a false negative result, so that's a bit tricky! Absolutely awful that you've had to deal with all this effectively since childhood!!

No - primarily because it would be unethical for doctors to use anything other than pred in someone who was likely to have GCA . That is one of the problems with trialling other drugs, you have to use them alongside pred and investigate if it reliably lets them reduce the pred more quickly. That seems to be the case with tocilizumab for example.

An added problem is that for MS (for example) in 2001 the annual cost of interferon was well over £7K - and was only available for about a third of patients. I imagine it may well cost even more now - a lot more than cheap as chips pred.Tocilizumab isn't going to be easily available for GCA at its current cost either - £17K per year.

Hmm yes. The old problem of funding. Suspect that is why I had such a fight to get it. But whatever I do have it works like a dream for me.

Understanding and treatment of vasculitis in general is pretty patchy really. A lot of us are dosmissed as hypochondriacs or hysterics. Once you see someone who understands...my god the relief of getting proper treatment.

Wouldn't it be nice if they could work out what it was! How did they discover it worked at all - not the sort of thing you'd get to try like a week of abx is it. 

Mind you - if it works, let's not knock it!

Well I am diagnosed with Behcet's and volunteered for a drug trial. Within anout a week normality strikes. Amazing. X

Yes I don't know either why they ruled it out without biopsy. It is something perhaps I should have putsued more at the time but I just didn't know much about it then and was feeling terribly unwell.

The biopsy isn't that accurate - even when it is described as the "gold standard". It's positive in 40% - positive is 100% certain, but if it's negative all it means they didn't find what they were looking for - like you can't see a mouse despite the droppings being there.

How interesting - is the trial still ongoing? Was it for Behcet's? I know someone else with that - originally diagnosed with PMR but she was convinced it was something more and luckily had a very helpful GP who referred her all over the place until they got the dx.

I just had a conversation with someone at Vasculitis uk which was interesting and convinced me that I suffer the effects of Behcet's which....like Lupus...mimics other diseases.

The trial I was on is over. It was 4 years ago but there is another trial underway in the uk at the moment.

Behcets is a nasty one, as is Lupus. Will you get on the new trial?

Hi yes it is awful as is what you're going through. I don't need the trial now as currently being prescribed the interferon. Symptoms well controlled at the mo. Only minor issues. I just hope it stays that way. X

If your friend wanted details of the trial the behcet's syndrome society wpuld have that info. Think it may work so well with me because I have mainly neurological symptoms. Not sure.

I suspect it may have been her you spoke to - she womans the helpline for VasculitisUK!

Yes I know exactly who you mean. Very resourceful. X