New Girl

[Obscureclouds]

Hello I’m new to this-just diagnosed with GCA. Interested in comments re Preds as I’ve been started on 60mg a day feel great but highly animated so only sleep for short periods. Worse thing is I can stop talking and keep interrupting people but however hard I try I can’t stop doing this. Has anyone else had this? Had my first appointment with consultant and he got quite cross saying I was a very difficult person and I could hear that at times I sounded confrontational which is totally out of character and very upsetting.

[JeanE4]

I was also confrontational when I was on the high dose prednisolone. Couldn't sleep, couldn't stop eating or interrupting. The symptoms will go as you taper down the dose. Maybe worthwhile mentioning the side effects to people close to you and also the consultant/doctors treating you.

Good luck. I have been diagnosed for 16 years. I am closely monitored at the hospital but lead a relatively normal life, as long as I pace myself.

[Obscureclouds in reply to JeanE4]

Thanks I did have a very different autoimmune disease after my flu ja last year and the same thing happened until til I came down to about 30 mg I do explain it to everyone so was disappointed the consultant wasn't more sympathetic. I think he was frustrated that I wanted to consider a link to what happened to me last year as all my symptoms for the first 6 weeks or so were identical and in both cases there was no sign of Respiratory or Vasculitis disease until that time. Reassuring that you are doing so well after 16 years. I lead such an active life I really don't want that to change

[DorsetLady]

You might like to look at the PMRGCAuk forum, much more info on GCA there.

healthunlocked.com/pmrgcauk...

I had GCA and following sight loss in right eye - was started in 80mg so know where you are coming from.

Your consultant should be well aware of the effects of Pred at high doses and should have explained why rather than react the way he did.. not a professional approach from him.

Maybe have a look at this welcome post- and also please consider joining the charity

healthunlocked.com/pmrgcauk...

Plus this -

healthunlocked.com/pmrgcauk...

[Obscureclouds in reply to DorsetLady]

Many thanks for your reply. I started my consultation by explaining about the talking so had hoped he would he more sympathetic.

[PMRpro in reply to Obscureclouds]

We look forward to hearing from you at the PMRGCA forum.

[zoe69 Moderator Volunteer Vasculitis UK]

I have GPA vasculitis, but I was on high steroid dose at the start of my journey. Prednisolone affected me in multiple ways, I got insomnia, I had a huge appetite, but the worse was that I got snappy, no patience, got irritated with absolutely everything. One of my colleagues at work approached me and kindly told me that I have changed so much while on treatment and that my relationships with other colleagues are holding on a thread.

I hadn't really noticed how abrupt and confrontational I had become. I called my GP and discussed it and was put on a low dose of citalopram. It took a week or so, but it worked.

I was informed about the potential side effects, but I couldn't see or acknowledge my personality change.

[Obscureclouds in reply to zoe69]

Many thanks for you reply ad at least I am lucky in that I am aware I'm like it if not the volume I'm speaking at (poor husband). I feel really upset that I can't stop it. I do try to tell everyone in advance so was disappointed the consultant wasn't more sympathetic.

[Mooka]

Your consultant is in the wrong not you! Plenty of good advice on here I can’t add to except to assure you it gets better as you reduce your dose.

[Obscureclouds in reply to Mooka]

thanks

[oldtimer2]

My kids (well they are in their 50s & 60s now) always know when I've had to put up my steroids because I talk too much and too fast! It seems a common problem to becaome rather 'hyperactive' on high doses. As you come down the dosage it will calm down. Just warn & apologise to people in the meantime.

[Obscureclouds]

Thanks - poor husband suffering in the meantime

[RiviS7]

Nice to meet you Obscureclouds. I love your photo of the bird! The first few days I was on pred, I was running around the house cleaning everything, but that didn't last long and then I just got tired. I do find that i'm emotionally all over the place and for real can't handle any added stress. Unfortunately, I can't get away from the stress, so I have to find ways to manage my wellbeing better.

[Obscureclouds]

thanks, not sure where the bird came from it must have got added automatically but very nice. Sorry to hear about the stress and do hope you can soon find a way of managing that. Fortunately, I feel really well both physically and mentally just hate not being able to keep quiet. My house is also so much cleaner and tidier than normal. Feel a bit in limbo at the moment as no idea when I’ll get any follow up after seeing the consultant last week and still waiting for his promised letter but I guess I’m just one of many.

[Galaxy2]

That’s so interesting, welcome and thank you for posting.

I’ve noticed for the last few years my habit of interrupting people, I know I do it and am forever apologising but then keep doing it without thinking. I thought it was just a bad habit I’d got into as I work at home and don’t have all the people contact I used to have. I never realised it could be related to steroids. Steroids definitely changed my personality, I’m so much more anxious and irritable too.

Welcome , you’ll find lots of friendly people here who are always happy to help with any queries

[Obscureclouds in reply to Galaxy2]

Thank you for your welcome. From the replies I have received, I have already taken comfort from joining the group. It's not the sort of thing I would normally do but, after a disappointing non-discussion with my appointed Consultant, I saw the Vasculitis website on line and posed some issues to the help line. I was really impressed to get a very helpful and caring response the next day which included a link to this group so, at a point when I couldn't sleep, I thought I'd give it a go. I'm so glad I did.

[ZiggyDiego]

sorry to hear this. If you look on the side effects of prednisolone, one effect is on mental state. Your consultant should know this so it’s disappointing to hear his reaction. Talking nonstop is a sign the prednisolone is affecting you mentally. The best solution is to reduce the dose. It might be worth getting support from your GP or NHS111. I can’t take prednisolone at all now as it can make me very high or dangerously low. So please seek medical advice especially if you don’t have a treatment plan to taper soon.

[Obscureclouds in reply to ZiggyDiego]

Thanks I did think the consultant should have had more understanding as I did warn him before hand and definitely not nice him saying how it put him in mind of his mother who used to interrupt him when he was younger. I was on 40 mg Pred last year after a different autoimmune reaction and think the talking had settled down by the time I went down to 30mg I started off much higher this time and it's been even worse (poor husband) and more interrupting but I am due to be weaning down to 40mg next week so fingers crossed.

[ZiggyDiego in reply to Obscureclouds]

I hope things are better now?

[Obscureclouds in reply to ZiggyDiego]

About the same but I have now reduced to 40mg of Pred so hopefully going in the right direction. Still have periods of being wide awake in the night. We’ve just had a couple of days away and I went down to the lobby to sit & walk around and never did get back to bed yet still had an active day including a 6 mile walk. Amazing things steroids. Still no symptoms of illness. Thanks for asking

[GinnyMa]

sounds so familiar….sleepless…up at 2 am cleaning kitchen cabinets…..chatted with anyone constantly and I would call self an introvert …worried about everything previously, but not now…I felt free and no worries….to remember how it felt to not worry, I painted my front door purple and every time I pulled into the driveway I was reminded. That was all 9 years ago when I had GCA. Two years ago was diagnosed with Vasculitis , MPA, and on prednisone again…..but they taper you down pretty quickly. Prednisone is a miracle drug when you need it. But the side effects are not good.

[Obscureclouds in reply to GinnyMa]

Thanks its good to know you are not alone I do try to warn people but it's getting a balance as when I say I'm taking a high dose of steroids I don't want people to think I want sympathy or to talk about my illness. It is embarrassing though when you find yourself joining into the conversation of strangers. Yes Pred does seem to be a miracle drug as it seems to cut in overnight and you suddenly feel so well. I'm due to cut down to 40mg next week so hopefully the talking etc will start settling down At least I'm not snappy and aggressive as some people say they became. I do think the consultant could have been more understanding and plan to tell him so when I see him again.

[Investigator1]

Hi Obscureclouds. Yes I have GPA and like you was on 60mg Prednisolone and ooh! My insecurity bordering on paranoia was one thing but snapping at my poor wife for the littlest thing bless her. I went to see my Consultant because the GP was useless and she said “I don’t want to give you anything else to counteract it” which suited me, but she said try two things, firstly exercise as much as you can to get rid of the extra energy and secondly keep the Carbs really low this will reduce weight gain and also keep sugary and starchy foods from giving you an energy kick. After about a month I started sleeping better and my temperament improved plus I didn’t increase any significant weight so winner all ways. I have been steroid free for 3 years + now so it was good advice that worked for me. Take care and hope it gets better. Nick.

[Obscureclouds]

Thanks so glad it has all worked out for you. Most of the studies I’ve seen on line advise Prednisolone is the recognised drug for GCA but for some reason the consultant I saw seems to want to get me on Methotrexate as soon as possible. I am a bit wary as my granddaughter had really nasty side effects of stomach cramps and sickness and then violent headaches when she was on that. Fortunately, although I talk so much, I’m not snappy or aggressive as some people seem to get.. Having so much energy is good although I’m still getting up around 5am I’m now on 40mg so hoping that when I get down to 30 things will calm down more. Thanks for your interest in getting back to me. Best wishes

[PMRpro in reply to Obscureclouds]

Some consultants think that MTX is a wonderdrug in PMR/GCA too and will allow you to taper the pred dose faster and without flares. There is no proof of that yet - a study IS underway directed by Prof Mackie in Leeds - and reality is more likely to be that it doesn't make much difference or you feel unwell. For a small cohort of patients it works very well - but you have to try it to find out if you are one of that select group!

[Obscureclouds in reply to PMRpro]

Thanks for your advice. I had also looked on line and could only see one small study that found MTX was a positive factor in keeping patients in remission. All the rest seem to show no evidence of benefit so given the side effects I am aware of from other users I'm not convinced it's something I need to take. The very helpful person who replied when I first contacted the Vasculitis UK helpline suggested Tocilizumab as working well for people with GCA but it may be that I won't be able to take that if it's not recommended for someone who has had a melanoma in the past . As I have heard nothing from my consultant since I saw him on 30th August - not even the promised follow up letter (despite chasing) I don't know when I will get to discuss anything with him. This also means my GP still hasn't had anything to advise of my diagnosis or what drugs I am on which I think is very poor. The only reason I know I could reduce my dose down to 40mg and that I should be getting 2 weekly blood tests through my GP is because someone from the Hospital Rheumatology Helpline read it out from the Consultants letter that she said was waiting sign off 2 weeks ago.

[PMRpro in reply to Obscureclouds]

Prof Dasgupta from Southend, a co-founder of the PMRGCAuk charity, expressed the opinion at a seminar a couple of years ago that there really isn't much of a role for MTX in GCA. And frankly - when it comes to GCA I would put him at the top of the expert tree in the UK with over 30 years experience! What he doesn't know about GCA is probably not worth knowing. The current self-appointed GCA expert insists that PMR and GCA only last 2 years and you can use a fixed taper - unfortunately the illnesses haven't got the memo ...

It may be that the rubrics say that you can't have TCZ unless you have failed MTX. But there is a dedicated PMRGCA forum on Health Unlocked with a load of people with or who have had GCA (just checked, I did give you the link) so I have no doubt that someone there may know better than me. I live in Italy, very different rules for drugs here!

[DorsetLady in reply to PMRpro]

Gave link as well.. plus my info/intro post.

[DorsetLady in reply to Obscureclouds]

You may have been able to drop from 60mg down to 40mg [was that in one drop?- sounds like it from post] but you need to go a bit steadier from now on.

Although the universal guidelines do say - reduce 10mg every 2 weeks from 40mg until you reach 20mg - it is not achievable for everyone. and many of us 'oldies' recognise that 2 weeks is not always long enough to know that current dose is sufficient before you drop down to lower one. If it's not, and you do that for 2 or 3 tapers you are likely to flare - and also you will not know what dose was sufficient. That inevitably means you have to go back to a dose that is higher than you actually require.

Blood tests are useful, certainly at the beginning, but they aren't the be all and end all in tapering... they should be looked at in conjunction with how you actually feel. ie.. no return of symptoms.

Actemra/TCZ does have this warning - so that would be something you would need to discuss with your medical people -

Cancer -ACTEMRA may increase your risk of certain cancers by changing the way your immune system works.

Your GP can get the information on what other drugs you require by looking on the internet. - but most important is -

Bone protection - Calcium/VitaminD supplement for all patients [sometimes a bisphosphonate is also required],

You may also require a PPI to protect stomach - but not everyone does.

[Obscureclouds]

thanks yes I was surprised when he said to reduce down by 10 per every two weeks. When I was on steroids last year I started at 40 for 4 weeks then 30 . The weaning plan was then to decrease by 5mg per month thereafter but through monitoring I was able to accelerate my weaning anafter 20mg.. I also take omeprazole and vitamine D/calcium supplement. I was due to start a weekly bone protector at the beginning of August but couldn’t take the one prescribed. The consultant said he’d arrange an alternative as a matter of urgency and have chased that up again today as I’ve heard nothing further. hanks also for the link which all supports the links I’ve already followed where there isn’t much evidence to promote the use of MTX.

[DorsetLady in reply to Obscureclouds]

Many of us on PMRGCA forum managed to get into remission without it -and TCZ which hadn’t been authorised for GCA pre 2018 ish!

[dbjuly23]

HiWhen I was first diagnosed with vasculitis in 2022 I was I initially on high dose prednisone and had an intravenous dose too. I couldn't sleep and was awake all night. The nurses would check on me and find me doing crosswords or colouring. My husband also told me that I used to talk a lot and often not make complete sense although I thought I was speaking normally. The symptoms resolved as the dose was reduced. But the worst side effect for me was the development of a moon face. After discharge, I remember looking at my reflection in the mirror one morning and not really recognising the face looking back at me. I looked so bloated. Thankfully, this too has lessened as the dose has reduced but I do still have a rounder face than I used to have

[Obscureclouds in reply to dbjuly23]

Thanks that is reassuring. Some days after not being able to get back off to sleep I get up and make a cup of tea about 2.30-3.00 am then never return to bed. Yet I still manage a full day which might include a long walk and Aqua exercise class as well as having a very clean and tidy house (lots of crosswords & puzzles too) - crazy! Thankfully no moon face so far, just a bit chubbier which looks good as it hides some wrinkles