Dr Sarah Mackie (my Rheumatologist) has decided on balance to treat me for GCA. Pragmatically she has decided to increase my Pred dose to 30 mgs ( scope to go up can rise to 40/50 mgs) for 2 weeks and see if my headache responds to this dose. If the headache responds to 30 mgs continue to treat as GCA. After 2 weeks, if the GCA symptoms are well controlled then tapering as follows. 25 mg for I week, 20 mgs for 2 weeks, 17.5 for 2 weeks, 15 mg for 2 weeks,, 12.5 for 2 weeks. 10 mg for 1 month and then a slow taper like DSNS from then..
I experience diarrhoea, which she believes could be a sign of mild Adrenal Insufficiency because of the long term steroid use and in spite of the Synacthen Test being normal ( she says that they aren’t perfect).I may even have Coronavirus that can present with atypical symptoms. I am breathless and totally lethargic. Mild version so far, very occasional coughing fits and two separate nights of delirium. Ought to trigger the Antigen Test.
I took my first dose today and already the nature of the headache feels different. She strongly suspects Large Cell Vasculitis from the Ultrasound Scan in February.
So it’s hello old friend Pred and scarves over the mirrors for a while. Oddly relieved and lucky to have two fine committed doctors at times like these. The bomb dropped and I’m ok. Thanks to my patient friends out there, keep safe.
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SheffieldJane
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You probably feel relieved it's being treat now and you already know to keep your carbs low to avoid any weight gain. You got down low once and you will again xx. YBB
Appreciated Sue! OH just made a face when I asked him to vacuum and polish the front sitting room, his workroom, that he is in sole possession of. He has clearly forgotten the effect of high dose Pred on my rationality and equilibrium. 😡
I try to ignore mine - let him disappear into the spare room/study to his computer and TV. I think I was justified in the 2 mega and 1 minor meltdowns ...
From what you have previously said SJ It sounded like you needed more Pred and hopefully this works ! Hope you HAVEN'T got the virus - and those symptoms disappear !! XX
YOU will get this. You will go down without any problems and all will be well and perhaps you did have Covid-19 in which case you are in the clear!!! hurrah! so that is what I will think. sending love love love. and lots and lots of energy. I laughed out loud at scarves over the mirrors. oxox
Jane I'm so glad you have the doctors that you do...the old addage...an ounce of prevention is worth a pound of cure. I'm so happy that the reunited you with your old friend 'pred' so that your eyesight will not be jeopardized. Just go with it....and rest, rest, rest. I'm sending all kinds of good vibes and rays your way. You've got this!!💖💖 I'm in your back pocket!
So sorry you have another battle to fight but I'm sure you will conquer it Scarves over mirrors made me laugh. Your sense of humour will help you through 💐
Jane I am glad that you have got to the bottom of this as you have been feeling so unwell for sometime. You will get on top of it , sending huge gentle hugs. Take care xx❤️
So pleased that at last you have a diagnosis and you have such good docs to see you through it, a great relief on both counts. They've been testing is our neck of the woods since the beginning so you shouldn't have a problem getting one. A friend of mine's daughter had one the other day. Your GP will tell you how. Think it's at the Arena but don't quote me!!!
Dear Jane, try not to worry. My Rheumy used the same pred schedule for my suspected GCA in Nov 2017. The side effects weren't too bad and I avoided weight gain. Feel free to PM me if you want to chat. I had a dreadful cough pre diagnosis plus nausea and weight loss and lethargy.
So pleased Jane that you have a definite diagnosis and can now move forward. You have loads of experience to deal with this so you will be able to traverse this!! Glad too that the headache seems to be “different” and that as you say you have a committed Rheumatologist who is interested and proactive. A rare find!!
Very glad you are hopefully getting sorted. You seem to have a good rheumy. I really hope this goes smoothly and you feel better in yourself. Take good care. Best wishes xxxxx
So pleased you are getting sorted Jane. Hope you improve swiftly. Take care xxx
Glad to finally hear that. You can have delirium, temp ....rigors and coughing etc with GCA. But I would always say go for the covid yes to anyone who can! Hope you feel much better soon.😘
So pleased you now have some answers. I DO hope you feel very much better soon. You have been such a kind and witty voice on this forum, and you deserve to feel well again.
Probably a huge relief to have a plan and move forward. Having faith in your doctors is also a tremendous help. Hope you continue to feel better and that you get that Covid19 test. I’ll be thinking of you.
Glad to hear you’ve been seen by Dr Sarah Mackie and given sound advice. It’s surely good your headache symptoms are beginning to change and you should continue to improve, then you can taper. Hope you haven’t got the virus at all but if you had, sounds like you’ve already come through most of it without knowing - you felt so poorly. You have the love and affection of a lot of people here all sending you good vibes xo
Good to hear that he is doing well. I think we should be alert for an atypical presentation. Basically anything viral. I have also had sharp stomach pain recently.
We seem to be on this journey together, Jane. 4 years of PMR and down to 4.25mg pred last November, when I was diagnosed with GCA - LVV. However, we are fortunate to have excellent care from our rheumatologist and we will get through this.
So sorry to hear you have now been diagnosed with GCA, but you are in the best of care, and the advice to go to 30mg seems eminently sensible.
I had PMR since summer 2017, had come down to 4mg last June when GCA symptoms started. Started on 50mg pred (which was a challenge), but with helpful advice here from DorsetLady and others, I have managed to reduce without any flares of either PMR or GCA: I am now at 8mg, reducing by .5mg every 2 weeks (which seems to work for me up till now), just a few shoulder twinges sometimes.
Just wanted to send greetings. You've been a great source of advice and comfort to me and others over the years and I hope things improve for you . As my Yorkshire relatives are always telling me 'what doesn't kill you makes you stronger' (or in a Yorkshire accent what dunt kill thee meks thee stronger).
Sorry about your news but glad at least you have a plan now. Just keep thinking of the future when we come out of all this and you'll eventually be able to join the family again and see more graceful rays gliding gracefully through the clear clear water (I assume that’s where your photo is from...?). As an avid scuba diver most of my 'go to' mindful places when I need to take myself away from a stressful situation involve water and various sea creatures. I find these thoughts very helpful and calming and found some joy in your photo this morning so thanks for posting that. 💐
I’m so pleased you are being well looked after, Jane. It must have been strange going back to the high dose but as you say such a relief to take a positive step. Wishing you all the very best on your new journey xx
Do hope you get through all this successfully. At least you know about it from the forum and experience so are not in the dark. Hope the Covid symptoms diminish but if you are eligible for a test do try to get one just to be reassured.
You now have answers, not want you want to hear of course, but going forward with treatment is a plus....you have good doctors too that you can rely on......
You have good tapering advice, so you will get there...
Wishing you all the best Jane, and thinking about you. You WILL get through this, and back to your old low dose in next to no time. Sending you lots of virtual hugs. X.
Glad you may finally have the answer and wish you all the best. I find your situation very intriguing. I've often suspected that GCA may be at the route of my difficulties, but never had anyone thoroughly investigate the possibility.
The Ultrasound Scan was the big game changer. I previously had a scan of the Aorta that showed nothing, prompted by different readings for blood pressure in each arm - not something routinely checked and yet potentially revealing.
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Dealing with a relapse after 3 1/2 years.
Rheumy appointment 
GCA - PMR doing great after 2 months
Pred for pmr and gca
