Brand new to this forum and condition - apologies - this is long

[Sophiestree]

Hello. I am new to this website having recently been given a diagnosis of Giant Cell Vasculitis after 3 months of investigations. I perhaps should apologise first this is so long, but it has taken me a while to process exactly what on earth is going on, and Covid has delayed/prevented me from having any reasonable conversation with a Rheumatologist.

It seems after two ultrasounds, two MRIs, two CT’s and finally a PET scan I was finally given a diagnosis.

I am 62 but did not have all the classic signs of Temporal Arteritis, top of my head was fine, brushing my hair fine, no jaw issues. What I had was months of neck problems going down under my clavicle, major headaches and stabbing down the back of my neck. Back and shoulder issues, and most of all stomach issues. 3 months of fever and night sweats unable to do anything to the point of making a cup of tea was a chore. ESR and CRP were high but other than my liver, nothing on my bloods were particularly remarkable. Several organs though were shown to have issues with scans. Tonsils, lungs, liver, parathyroid and colon.

What was reported on the PET was extensive (their words not mine) inflammation from the aorta to all of the major branches down legs, arms. Intense uptake throughout the wall of the entire aorta, plus subclavian common carotid, and common iliac and femoral arteries bilaterally. Most intense in the subclavian with liver also shown to have inflammation.

I understand Takayasu is in younger people, but it seems I have some of those symptoms ie the aorta and its main branches as well as TA

I was given 3 days of 1gram steroid I/V followed by 40mg tablets. These will be reduced and I have been told to expect to be on these drugs for a minimum of a year.

I have established osteoporosis and an underactive thyroid. I was given zalendronic acid IV (where up to now I have avoided medication for) due to the steroids affecting your bones. I was also subscribed Omeprazole to take first thing, food and then prednisolone. Again something I would have avoided.

The side effects are stopping me now rather than the condition. Heart pounding (not fast) and a feeling like I am permanently standing on a mild power plate. Little energy, lack of sleep – 2-4 hrs per night at the moment, but I am nervous to take anything for that as I am a lightweight when it comes to medication at the best of times. So I am really hoping when they start to reduce this dose they will start to subside. I have started some light exercise but if I overdo it one day I definitely pay for it the next.

I only speak with the Rheumatologist on the phone due to Covid and she is always in a hurry as I am a ‘double booking’ apparently, so that is extremely frustrating.

Everything I read gives me Temporal Arteritis, which I definitely can tick a lot of boxes - headaches and pain down neck etc, but the stomach issues were just as bad which are more Takayasu, with legs and arms hurting and the whole of my stomach.

I am now wondering, even though I am responding to the prednisolone and my symptoms have subsided, whether I should ask for a referral somewhere where they are more knowledgeable in this field, however my doctor says she can only refer me to a general rheumatology department and not the two specialists I have found. One namely Prof. Dasgupta in Southend, which is not far from me as I live on the London Essex borders, or Prof. Justin Mason in Hammersmith hospital. Has anyone had success in a referral like this?

Really really sorry this is so long, I wonder if I am overthinking, and over researching at the moment, as now my mind is complete mush.

Thank you in advance

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Sorry you have to join us, but glad you have.

As Prof Dasgupta I would try for a referral to him - he is the recognised expert in this area - even if original appointment is private.

You might like to have read of this - and pull out the relevant parts - but you need to aware from outset that you are likely to be on Pred a lot longer than 1 year.

healthunlocked.com/pmrgcauk...

[Sophiestree in reply to DorsetLady]

thank you for your reply. I will go and look at the link you have sent me.

I am assuming from what you are saying that asking to be referred to Southend would not work and that I need to see Prof. Dasgupta before that can be put in place.

There is a lot to read and I am getting a little foggy, but feel I really need to be fully informed. I have organised a private DEXA scan as I was told there was a 4 month backlog which would be pointless.

Understood re longer than a year, I did think that, but another reason to maybe try and see someone more knowledgeable.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

As PMRpro implies he is very busy, and from what I gather not always easy to get an appointment- so maybe her (PMRpro’s) suggestions would be better.

[Sophiestree in reply to DorsetLady]

yes, thank you

[PMRpro Ambassador in reply to Sophiestree]

Officially, in England, you can choose where to be referred - but under the current situation all bets are off.

[Sophiestree in reply to PMRpro]

I think it's more you wouldn't get the referral to the professor but more the general rheumatology department in that hospital.

[PMRpro Ambassador in reply to Sophiestree]

Again, theoretically you can stipulate a doctor. But a specific referral for vasculitis affecting organs should result in him being involved.

[Sophiestree in reply to PMRpro]

Oh OK, she implied that she could only do Choose and Book and it would just be the general department. So I really need to send him an email then. Although I guess I should try and make it as short as possible!

[PMRpro Ambassador in reply to Sophiestree]

I would definitely contact him directly and ask for advice. He can only say no ...

[Sophiestree in reply to PMRpro]

yes, very true

[Telian in reply to Sophiestree]

Even through choose and book you can call them, as opposed to registering on line, and specify who you want to see. They will tell you if there are NHS clinics available. If none I would call his secretary direct. Prof D was my Rheumie for 6 years before moving out of area. He likes a challenge.

I did my homework on who I wanted to see before moving to Yorkshire, I requested to see Dr Mackie. When I got my appointment through it wasn’t for her and I pointed out I’d waited to see her only. They looked at my records and agreed I had and got the appointment. It’s important to say from the start who you want to see.

[Sophiestree in reply to Telian]

Brilliant, thank you for that. So ring and not do it online is the way to go. Really helpful. I have learnt so much already, I have a folder !!

[Telian in reply to Sophiestree]

I’ve always done that. You can ask a bit more than on line. Don’t let it go lightly if they simply say there are no clinics, ask when and who can you contact as you can’t wait. Even if you get the same response, they are after a doing as they’re told, you’ll get to know the system. If that doesn’t work you ring your chosen Rheumie’s secretary.

I never take no easily.

Keeping a folder is much needed. Also keep a daily diary of your symptoms and doses. This will be useful to look back on in many ways one being you don’t have to keep it all in your head. Take it with you to every consultation - bit like a comfort blanket as we often can’t think clearly to cue.

Best wishes.

[Sophiestree in reply to Telian]

I've actually just written directly to Prof Justin Mason at Hammersmith Hospital. If I don't get a response, which I likely won't, as I imagine he gets a fair old amount of emails a day, then I will ring his secretary to follow up and see what she says.

Got a burst of 'get on with it' today.... ha!

Thanks for that info, really useful

[PMRpro Ambassador in reply to Sophiestree]

Nothing ventured ...

[Telian in reply to Sophiestree]

You’re up for it now......

Good luck!

[PMRpro Ambassador]

I think it is probably more accurate to describe what you have as LVV (Large Vessel Vaculitis) - and it is, to all intents and purposes the same as Takayasu's in terms of the organ involvement but they have this fixation about age. One lady had a Takayasu's diagnosis until she was 50 when it miraculously changed to GCA!

You might find this interesting:

academic.oup.com/rheumatolo...

Figure 1 is at least very clear!

If it were me I would be trying to see Justin Mason. Alternatively, if they aren't too far to get to, Rod Hughes in Chertsey or Vanessa Quick at Luton&Dunstable might be worth a try. Rod does private work and will see you f2f even with Covid restrictions. Prof Dasgupta has been very good but seems to be a bit variable and rather research orientated at present.

[Sophiestree in reply to PMRpro]

amazing, thank you for this....

again I am wondering if I ask for a referral to Hammersmith, it doesn't really mean I get to see Justin Mason, although there is a link to contact him on his profile, so perhaps I can do that. I am happy to travel anywhere to be honest.

My new job tomorrow.

[PMRpro Ambassador in reply to Sophiestree]

If you send him the details you have given here it may pique his interest! I think he is probably a top choice for vasculitis affecting organs.

[Sophiestree in reply to PMRpro]

copy and paste shall I.....

thank you, I already feel a little skip in getting a move on with doing something about it. I feel extremely let down by my Rheumatologist, whereas every other consultant I have seen for all of the other organs have been fantastic. Typical

[Longtimer in reply to Sophiestree]

I asked my doctor to refer me to a particular doctor for PMR, and got him face to face.....worth the try....good luck...

[tangocharlie in reply to Longtimer]

That's how I got Sarah Mackie originally after problems with another rheumatologist

[Longtimer in reply to tangocharlie]

Yes, my doctor said you can't request a doctor, but I think he saw how complicated I am and went for the challenge...expected phone call, but saw him face to face 3 weeks ago....best one I have ever seen......

[Sophiestree in reply to Longtimer]

Oh that is interesting. I think because I have responded to the prednisolone they are not thinking I need a specific referral, but I will investigate. Who do you see?

[Longtimer in reply to Sophiestree]

I live in Norfolk, and go to the N&N.....I saw Dr Max Yates.

Have had PM R 9 years plus....have seen 2 previously....both useless!....

[Sophiestree in reply to Longtimer]

Totally get the useless!

[Sophiestree in reply to tangocharlie]

Leeds, just a tad too far for me, even though I am totally prepared to travel!!

[tangocharlie in reply to Sophiestree]

LOL, you'll always get a good Yorkshire welcome and a proper Yorkshire tea brew

[Sophiestree in reply to tangocharlie]

love yorkshire tea..... although my doctor today tried to tell me I shouldn't even be drinking the only two cups I now have in the morning. I told her NO! I am miserable enough, and I LOVE my tea.... actually a friend sent me some Betty's Tea Room tea during all this palavar, and i rather like it.

[tangocharlie in reply to Sophiestree]

Why aren't you supposed to have tea? Doubt any doctor wuld dare advise that round here! More likely to be prescribed it intravenously

[Sophiestree in reply to tangocharlie]

Which is usually how I like it. But it's because I'm not sleeping... I told her no anyway. I'm OK with not having any for the rest of the day, but not first thing.... no way. She have up...

[PMRpro Ambassador in reply to Sophiestree]

Oh for goodness sake! 2 cups in the morning is rather less likely to stop you sleeping than the large dose of pred you are currently taking!!

That like telling someone with a broken leg that their problem is the scratch on their big toe!!!

[Sophiestree in reply to PMRpro]

Hilarious.... 🤣

[tangocharlie in reply to PMRpro]

I used to beg my GP for sleeping tablets, but that is another thing you are denied because doctors think they are too dangerous, all due to misuse in the 60s or something. What could be more beneficial and restorative to health than a good night's sleep? I have a friend in Denmark, ex physiotherapist, who has neuro problems following a brain injury years ago and the experts in Denmark INSIST she takes them to get a good sleep or it leads to more problems.

[Sophiestree in reply to tangocharlie]

I know, my GP rang yesterday and told me to go and get Nightol!

She doesn't quite understand, it's not the going off to sleep which is instant, it's the 2-4 hrs later when I am wide awake club.....

But I gave up by then.

[Longtimer in reply to PMRpro]

Can you believe the rubbish that is spouted these days!........me without tea, no-one would believe it!

[Sophiestree in reply to Longtimer]

Nor me, I am known as a teapot!

[tangocharlie in reply to Sophiestree]

They do a Decaf version but steroids are notorious for causing insomnia, it's nowt to do wi' avin a cuppa tea or two in't morning.

[Sophiestree in reply to tangocharlie]

Don't you deprive me too of my one bit of caffeine for the day!!!

I defy my GP and will continue to drink my morning two cups of tea and relish them! Ha

[SnazzyD in reply to Sophiestree]

Frankly on high dose Pred tea made not a jot of difference, I was wired and that was that. I did try to play the game and attempt decaf tea at night but it was a poor second at a time where nice things seemed to be in short supply.

[tangocharlie in reply to SnazzyD]

It's absolute cack but I can't have normal tea because too many histamines. With some decaf teas the histamine is reduced with the process they use to take the caffeine out somehow eg Clipper. Yorkshire tea decaf isn't one of them so I risk a real cuppa every now and then, that's the kind of wild youg thing I am ....

[Sophiestree in reply to tangocharlie]

Devastated for you! ahhh

[Sophiestree in reply to SnazzyD]

Exactly!

[SheffieldJane in reply to Sophiestree]

Sarah Mackie is wonderful. She even gave me health advice via email at midnight the other night. I had sent the email for her to get in the morning ( I was mortified). I asked for her at the outset, due to recommendations on here. I travel to Leeds from Sheffield to see her. Pandemic allowing. Best thing I have done for myself during this. I had to push and insist a bit with my GP, who grumbled ( perfectly good Rheumatologist’s in Sheffield) - so worth it! I would have raided the savings. I have GCA/LVV. Good luck!

[Devoid]

Hello I just wanted to say I can remember how it feels in those early days following diagnosis and taking medication that itself brings other issues. I have Large vessel vasculitis seem in aorta both ascending and descending as well as numerous other vessels, stomach problems are common as the lower part of the aorta can give you problems down to the groin region. Limb issues were a major problem. Now 16 months since diagnosis and on the whole I feel generally well, but even the thought of the beginning fills me with dread , so if there’s anything I might be able to help with don’t hesitate to ask. Every case seems to be different and I would be rich if I had a pound for every time the consultant has said that’s not the vasculitis but the symptoms/ problems only came with the vasculitis and he doesn’t have an alternative explanation

[Sophiestree in reply to Devoid]

Oh this is so good to read, thank you. Already this forum has actually changed me mentally in a very short space of time. I do know what you mean re looking back, as I most definitely, even though I have always been a 'glass half full' type of person, was sitting on my sofa thinking this was no way to live. And yes, I had groin issues too....

So I need to stop saying Giant Cell Vasculitis, which is what I was told, and start to say Large Vessel Vasculitis. Good start at least.

[Devoid in reply to Sophiestree]

My doctors note for work started off stiff neck, then headache, moved to suspected Gca then large vessel vasculitis and now he usually refers to it as systemic vasculitis, . It has thrown everything at me but this forum has got me through some of the most difficult times. Be kind to yourself and rest when you need to, pace yourself on good days or you will pay the price the next day. Also I found I struggled more emotionally about 2 months in so again that might be when you need extra support . Take care of yourself 😊

[Sophiestree in reply to Devoid]

Thank you. I already can't believe how different I feel just reading these responses. I actually think that the fevers saved me as I am self employed and work an average 12 hr day so pretty much feel exhausted most of the time. I would never have gone to my doctor but I ended up needing 2 days to get over each day I worked. Emotionally I don't think I could have got much worse, but now this seems to be all consuming.

Just the suggested supplements alone to help my bones... and weirdly, I have totally lost my appetite and have to make myself eat in the evening. That's definitely not me...

[SheffieldJane in reply to Sophiestree]

Beware the voracious appetite that may follow and avoid the carbs.

[SnazzyD]

Welcome to this rubbish club but brilliant group that makes up for it. The early part of this can be a real trial because one has to learn so fast as well as being able to judge one’s diagnosis and advocate for oneself. At the same time one’s brain is mushed by Pred, sleep deprivation and weird fatigue. It’s not always like this and yes as the dose reduces, the mad fog lifts.

[Sophiestree in reply to SnazzyD]

Yes, I'm already seeing that this group is helping and the information I have had is amazing. I am so looking forward to a reduction in the dose, hopefully next week when they mentioned going down to 30mg from 40mg....

It's so all consuming, and I am trying to not get too obsessed.

Woken up to a blocked ear like I'm in a swimming pool this morning and wondering if that also part of the medication... I suppose I can't blame everything on it, but I feel I am right now.

Can't tell you how much I appreciate the replies, it's really lifted me.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Could be related to subclavian common carotid artery....and a drop from 40mg to 30mg is a bit steep - 40-35-30 would be better......and only if you have no symptoms!

[Sophiestree in reply to DorsetLady]

Interesting re ear. Yes, I did wonder re the reduction in dosage.

She said from 40-30 for two weeks and then reduce to 25 for the next two, blood tests and she will review

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Maybe try 35mg for one week, then 30mg for second week...then 25mg for next two. But if you get any issues after the drop to 35mg or 30mg, or even 25mg raise with her -do you have contact number?

Note: first couple of days after drop may be steroid withdrawal, but if you have problems after 4th or 5th day on new dose - then don't reduce again until you taken advice...whether it be rheumy , GP or here.

PS - ear issues are linked to GCA - study done in last year or so, will link post _

healthunlocked.com/pmrgcauk....

[Sophiestree in reply to DorsetLady]

Can I do that when they have told me to go to 30mg? I know I am not that enamoured with her, but don't want to anger anyone. I certainly have enough though to add an additional 5mg to each day.

Impossible to get through to anyone. It just rings out. Secretary is not so great either, didn't know what bisphosphonates were or what a DEXA scan was.

Thanks for the link re ears. I'll go and have a read.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Well - you will be at 30mg at the end of the 2 weeks which is what she wanted. The fact that you’ve got there in 2 steps rather than one.....maybe keep under your hat 🎩.

If you feel you’d rather follow her instructions to the letter then do, I fully understand, and don’t want you to feel I’m pressuring you to do something you’re not happy with.

I (like most on here) did as instructed early days... until we had the knowledge and confidence to know what was best for us, and could negotiate with doctor if necessary.

But do keep a diary so you can report any issues.

[Sophiestree in reply to DorsetLady]

Understood. I may well, I don't want anything else to deal with.... as you say, she won't know it's only a week! Ha!

[SnazzyD in reply to Sophiestree]

Ha ha! Trying not to be obsessed by anything on high doses is a challenge! Hang in there. Don’t be too discouraged if you get to 30 or 40 and don’t feel entirely normal; it is a slow change and it does accumulate a bit in that you feel the face changing and muscles feel weaker. Again it does improve but you have to dial down expectations though I expect at this stage you’ll take any respite at all. For now the Pred is your mad friend and this awful bit is needed to get that runaway inflammation under control.

[Sophiestree in reply to SnazzyD]

Mad friend, I already have some real ones exactly like that, so it will slot in nicely!!

Sleep would be good.... but yes, I have to realise that even though the meds have changed so many symptoms, I am still not OK.

[Frewen1]

Hi Sophiestree ( and everyone )

I’m quite new here too... diagnosed GCA three months ago ( temporal and aorta ). Am just now down to 20mg, but still really “wired”, muzzy and leaden limbed. Drop things. Recently began a discussion here on sudden (surely pred-connected) incontinence when walking ( not overnight, thank god) which my rheumatologist had never heard of, but I learned on this forum is most definitely a common occurrence. Hate looking in the mirror, and dread asking for reassurance that one day I shall recognise my face again in case I’m told I won’t. People are very knowledgeable and helpful here. It’s also, as you say, incredibly reassuring to feel we’re sharing the experience and aren’t cast adrift.

[Sophiestree in reply to Frewen1]

Ah, sorry about your diagnosis. I shall look out for the incontinence then, as if we don't have enough to deal with already. I have definitely noticed a different in how my skin is, face and body. Also I seem to bruise rather easily. When you do finally come off the steroids, is it irreversible with the skin? It's bad enough as it is!!!

[PMRpro Ambassador in reply to Sophiestree]

It should improve as you reduce - but in the meantime avoid using soap products (anything that foams) and try using Doublebase or Diprobase. Both can be prescribed , are used a lot for eczema patients, but are also available OTC for quite reasonable prices.

[Sophiestree in reply to PMRpro]

Good tip, I will get some. Thank you so much.

[SnazzyD in reply to Sophiestree]

Start your pelvic floor exercises now!

[Sophiestree in reply to SnazzyD]

hahaha.... will do!

[Pippah45]

Welcome Sophie to this wonderful and informative and healing forum. They have helped me keep my sanity over the last 18 months or so since the start of my journey. Very best of luck.

[Sophiestree in reply to Pippah45]

thank you. There is so much to read on here I am not sure where to start!

[tangocharlie in reply to Sophiestree]

Read it all - you'll be part of our merry gang for a while. You'll see many Q&A crop up often eg tapering and you'll soon become your own expert. All the best

[Sophiestree in reply to tangocharlie]

thanks

[suzy1959]

Welcome, Sophiestree!

You sound like a very sensible person who will get your head around this and you will get to the point where you feel a bit more in control of your illness, having got as much information from this forum as you need.

You have done very well already to find us already, despite the extra difficulties that Covid has given you.

I have consulted with Prof. Dasgupta in the past- he was my third Rheumy, my local ones were useless- and he was the one who got me a diagnosis finally after 2 years, due to a PET scan ( I have PMR only). I have also seen Rod Hughes in Chertsey and found him to be very helpful, reassuring and knowledgeable. If you want to hear any more about them, drop me a PM.

Hang on in there, be gentle with yourself- you are ill at the moment and need rest and relaxation. Life will get better, but for now you need TLC!

[Sophiestree in reply to suzy1959]

2 years, wow, that must have been dreadful for you. I can't imagine. I was at rock bottom with the fevers and complete exhaustion after 3 months. I do hope you are doing ok now. I must admit I am rather enjoying the fact that I can't work.... worked non stop for 40 years, well enjoying now I am not so ill, although the side effects are stopping me from a fair amount. This is a great forum.

[Rugger]

Hello Sophiestree,

You already know that you're not alone on this forum and I hope that helps a little.

I developed GCA-LVV over a year ago, after almost 4 years of 'relapsing' Polymyalgia Rheumatica. Like you, it is in my aorta and its branches.

I have an excellent Rheumatologist in Leeds, which is a bit too far away for you! She started me on a biologic drug, Tocilizumab, just before lockdown.

I hope you find the care you clearly deserve. 🌹

[Sophiestree in reply to Rugger]

Thank you for this. I did in fact ask my Rheumatologist about Tocilizumab but she said I wouldn't qualify as I was responding to the prednisolone. I am just very concerned about my osteoporosis as it is pretty established already, and am nervous about that deteriorating.

Great you have found the right Rheumatologist, hopefully I will too in time. There is so much to look into and investigate.

Take care

[Frewen1 in reply to Sophiestree]

I had exactly that response re the Tocilizumab - only prescribed if pred not working

[Sophiestree in reply to Frewen1]

hmmm shame as I am very concerned about my already established osteoporosis. I have so little faith in my Rheumatologist when I asked for the DEXA she said there was no need as I had just had the Zalendronic IV.... what? I still need to know my numbers surely. I have arranged for a private scan in a couple of weeks for my own piece of mind more than anything. Then maybe compare in a years time. At least my GP totally agreed with me.

[SheffieldJane in reply to Sophiestree]

The situation with Tocilizumab may change for you. I had been treated with Pred for over 4 years for PMR but had begun to get side effects such as steroid induced diabetes and hypertension. My Rheumatologist made the argument for me and won a year of it. I have been able to reduce Pred very quickly.

[Sophiestree in reply to SheffieldJane]

Hi.,thank you for all your thoughts ... how are you now on the Tocilizumab? Has it changed anything for you. I am definitely avoiding most carbs. I do have porridge in the morning before taking the prednisolone but that's pretty much it. I think because I feel so rubbish from the side effects I have lost interest in food. Maybe that will change in time, I have only been taking them for 6 weeks. This condition can be all consuming sometimes.... maybe I do need to get on that train to Sheffield to see someone!

[SheffieldJane in reply to Sophiestree]

I wish I had great news for you about Tocilizumab, but I don’t. Apart from reducing from 40 mgs to 10 mgs in record time, I feel pretty unwell and exhausted, much worse than before treatment for GCA. Tocilizumab has weight gain in the side effects too. I feel flu like and have a chronic eye infection and nasal infection that won’t clear. I have no PMR pain or typical GCA pain. I had learned to understand and manage Pred and taper accordingly. With this drug, I really don’t know what’s going on and where my symptoms are coming from. I endure it because of the hidden harm Pred was doing and because my Rheumatologist has faith in it. The exhaustion I feel is overwhelming. I recently increased Pred from 8-10 mgs and I think I feel stronger. I felt so ill that I penned an email to my Rheumatologist late at night expecting her to get it first thing. To my astonishment she replied at midnight. She suggested that I ring 111 in case it’s COVID or go to A&E because she didn’t feel confident treating me by email. We compromised and I increased Pred by 2 mgs and stopped feeling so deathly. So maybe it was the fast taper ( the only plus).I travel to Leeds when the Pandemic allows. To see Dr Mackie who specialises in these conditions. She worked hard to get this expensive drug for me and I feel guilty that I am not doing better . Very occasionally I feel alright for a short spell, this gives me hope. Others do better and I think I am sensitive to modern drugs. Pred was fine until latterly.

[PMRpro Ambassador in reply to SheffieldJane]

Don't forget that tcz only works 100% for half of patients - usually Sarah is good about remembering that!

[SheffieldJane in reply to PMRpro]

I wish doctors explained the way you do. Taking these drugs shouldn’t feel like an article of faith for the patient.

[PMRpro Ambassador in reply to SheffieldJane]

She can fall over her feet when she gets very enthusiastic, bless her. She so wants her patients to be better.

[StanDieks]

(ex member here, GCA at 41 , diagnosed at 50, 14 strokes, remissioned with preds until this week where I had a hip transplant and it looks like my GCA has completely returned, now 53.)

I have a few tips as well.

The first part you know:

If you're in that early stage, one knows hardly anything, one tends to worry about everything, one has an uncooperative brain and all of that can get your cortisol to go climbing the walls, and it might have been the cortisol that triggered the disease to start off with. Who knows for sure?

Sure. Inform yourself, take action, and do not just take advice of data too seriously too soon. All of that is logical. The moment you are on preds and tapering you're on your way.

Last bit of this part: Some people are lucky to receive Actemra, or able to pay for it. You should if you could.

I couldn't, didn't and ended up with a wide variety of all possible permanent damages because of the preds nasty side effects.

My list is not healthy for your wellbeing so I' won't divulge it. Because of that:

-------------------

Try to find fun. Get it anywhere you can. Throw money at it if you can. Find ways. It's so underestimated, under-mentioned, neglected or even utterly missing.

Yes. Do your "decease-duty tasks" twice a day, for an hour if you really must, but then veer away to all things fun. Watch Netflix comedy, chat with long lost friends, whatever tickles your fancy. Stay away from all medical talk, at least 22 hours a day.

I can't stand old wives tales, but in our cases, laughter actually improves your condition. Finding tons of laughter is hard work, compared to how easy it is to find worry and misery, faced with a new diseases and an unsure future. Now there's Covid and lockdowns, on top of your diagnoses and the heavy pharma, so you have a substantial chance to get sucked into a clinical depression. You do not want that.

So, put the little energy you have there, and suck in those laughs. Refuel your mind. Catch all the sunrays you can. Treat yourself. All of that will help your recovery and surely makes these bumpy years pass by in a lighter fashion.

[DorsetLady PMRGCAuk volunteer in reply to StanDieks]

Hi,

Sophiestree lives in UK, so our rules about receiving Actemra are different to yours....as is our medical system. Most UK patients on here are treated under the auspices of the NHS, and therefore do not pay directly for treatment so are limited to what choices they have.

Actemra use is limited in GCA treatment - most do not have the option to throw money at it.

Can I ask what permanent damage you refer to? ...and are you sure the Pred is to blame, and not the fact that your GCA went undiagnosed for so long? Been there, got the t-shirt.

[StanDieks in reply to DorsetLady]

I got posts, older ones on this forum. "GCA at 50", and other stuff, under "floyd111". and under my present handle. Lots of stories, bad luck, and poor choices.

[DorsetLady PMRGCAuk volunteer in reply to StanDieks]

Only one post and a couple of replies come up under current name, and other names don't exist.

[PMRpro Ambassador in reply to StanDieks]

If you left the forum then your older posts are no longer available. So if you could add something to your new profile it would be helpful. Not least: potted history and ethnicity as well

And by the way - if we all restricted our activity to 2 hours a day you wouldn't have much of a forum!

[StanDieks in reply to PMRpro]

Right! I had no idea. Well, if all of that is gone, these weeks are surely not the weeks I would want to revisit my anxieties by trying to re-write that stuff. That would not be wise in my condition.. But short, it's a story of 10 top specialist denying and delaying my treatment for 6 months despite 8 strokes, and then sticking the knife in good and proper. It just gets worse from there.. later, maybe.

[Sophiestree in reply to StanDieks]

Wow, you have really been through, must have been hideous for you, and now you are going through it again. But yes, I totally agree, I am trying to do happy things, and am also trying to restrict my google activity... treating myself too, but maybe need to start holding back on that for a while, perhaps treated myself too much.

I really hope things are more hopeful for you this time. Must have been a huge blow to you.

I am now curious as to what you mean by the permanent damage you have suffered?

[Frewen1]

Just so interesting reading all this, and commiserations StanDieks on the dreaded return... (50% of us get this?)... like Sophiestree, I'm just starting out. "Throwing money" at anything not an option... and am trying to proceed much as per the good advice I'm reading here... but you still want to KNOW, don't you? And want to be told of good and hopeful outcomes? And of course that's a pointless objective because it's all so different for each individual...

[StanDieks in reply to Frewen1]

You hit the nail right on.. I can second them feelings, and then some.

I have no idea about the details of your case, but in general there is life AFTER GCA, as well as life WITH GCA. But as long as you're chewing more than xx preds every day, that may not feel like that.

For me 30mg/d was a tipping point between just staring into the darkness all day, and feeling a bit human again.

I barely noticed 15MG/d, but by then, I might have forgotten what "healthy" felt like. Also true.

It still is, for that matter. For me, spending my days talking meds is the worst idea ever. I wasn't aware for some time, but I am now. I was just desperate to regain control, and knowledge is some form of control.

Logical, but still a bad idea if it takes up too much space.

[Frewen1 in reply to StanDieks]

Wise. Thank you

[SheffieldJane in reply to StanDieks]

Yes wise. Hello floyd111. 👋

[winfong]

Just to chime in that my diagnosis was almost identical to yours - large vessel vasculitis, but neither temporal (GCA) or TAK. Funny that it took so long to get diagnosed with vasculitis, and then I don't fit into either of the 2 neat categories.

[Sophiestree in reply to winfong]

That is good to hear I'm not the only one... what has your treatment been? And your progress? Did it take a while to diagnose?

[winfong]

Sounds like I had it for years. Unfortunately, I also had a GP who was clueless. It all came to a head last summer when I had classic constitutional symptoms, including losing 40 lbs. Even then, it took about 2 months (and visits to many different specialists) until I was finally diagnosed. The pred worked wonders, and things went well until my last drop. Started actemra at the same time as the drop, and it filled in well at first, but didn't last. Bumped up my pred and feel better. Guess I'm now on the same roller-coaster as the rest of you all now.

[PMRpro Ambassador in reply to winfong]

Even Actemra only gets half of patients entirely off pred - some still need a low dose, but usually much lower.

[winfong in reply to PMRpro]

Another infusion soon. We'll see.

[winfong]

Not sure. I believe I will switch to injections after a bit.

It seemed the like the first infusion did pretty well, for awhile at least. Only the first one, though, so definitely too soon to tell.

The diagnosis came, actually, in fits and starts. Got my first exposure to prednisone back in the summer (but only because they thought it was pneumonia / didn't know what it was). Probably got a steady diet of pred back in October? Hard to remember. It's all been a bit crazy and hard to follow and keep track of it all.