Hi,I am new to this awful condition.Had nearly a year of being undiagnosed and finally rushed into hospital Dec.22 with GCAand loss of sight in one eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am currently weaning quite quickly off pred because of eye pressure.Down to 7 mg,and every2 weeks drop another mg.Does anybody have any input on Tocilizumab for me please?I have SO many questions I need to ask about everything,but plenty of time for that in the near future.I really enjoy reading this forum,and have only just plucked up the courage to join!Many thanks to you all,when I get really down,you all make me feel that I am not alone in this!😀😜
Coopersmummy7: Hi,I am new to this awful condition... - PMRGCAuk
Coopersmummy7
Hi and welcome,
So sorry to hear you have sight loss…. Sounds very similar to my experience.
Maybe have a look at a couple of links - one on general info, and one on people’s experiences of GCA [including mine ] -
Info -
healthunlocked.com/pmrgcauk...
GCA stories -
healthunlocked.com/pmrgcauk....
No experience of TCZ [not authorised in UK when I had my GCA], but others will be along… and if you edit your post title to something like GCA and Tocilizumab you will get related posts and more replies .
And no, you are no longer alone…
Whilst I appreciate you wish to drop Pred dose quickly to reduce eye pressures, it’s probably not doing your GCA nor you much good… what are your eye pressures now, they should be returning to normal levels now you are into single figures of Pred.
Hello Dorset lady,thank you so much for getting back so quickly,and I shed a little tear when I read that I am not alone.Will have to get my daughter to edit my post title as I am SO computer illiterate ,would not know what to do.,Thanks again,and sorry to hear that you too have similar to me.x
Hi Dorset lady,Sorry,I didn’t see the bit about my eye pressures you wrote.They are now 18 and 19,I am on drops.They were 31 and 33.It was my rheumatologist who wanted me off the pred,Quick reduction because of the eye pressure.Am now on 7 mg a day ,reducing 1 mg every fortnight,but as I told the PMR pro,I am getting lots of aches etc,so not sure if it is to do with being off the leflunomide for 2 weeks as It gave me diahorrea,or the quick tapering,or another flare.All so confusing having to guess what it is!So glad I have some lovely helpful people to contact now.xx
The problem with some Rheumies is they get it a bit of a tizz with Pred and try and reduce patient too quickly.
I do understand about eye pressures, mine increased early days but as I was being looked after by the ophthalmologists, and they seem to have a more balanced viewpoint and understanding of pressures they didn’t get in panic about things, but did monitor things closely.
As for reducing 1mg every 2 weeks, that’s much too quick especially as you are now off leflunomide - and as PMRpro has said even if you go on TCZ that takes months to really take effect.
Hi again!You are right about the optomologist,they are more relaxed about it,they are just monitoring me ,and I keep up the eye drops.Not sure if I am allowed to ask what you or anybody thinks would be a good taper as to be honest I too think 1 mg fortnightly is too quick!I went from 20 to 15 in a fortnight,then 10,then now asI said previously,1mg every fortnight.Any suggestions would be welcome,if allowed !
Ophthalmologists understand the real importance of Pred with preserving and/or saving sight - and I’m not sure all Rheumies do. I guess they are looking at the bigger picture - and although sight loss is the most dreaded effect of GCA for patients - it doesn’t seem to be in some Rheumies’ mind. Apologies to those who are fully aware.
As for tapering, on higher doses for GCA it is possible to drop quite quickly once all symptoms under control, but as you get lower it needs to be extended to every 3-4 weeks [4 weeks in my mind] and once below 10mg then much slower.
Guidelines do say once you’ve reach 10mg, reduce 1mg every 4-8 weeks depending on disease active and patients wishes… once TCZ is added in it may well be more quickly - but not always.
In my opinion, and others on this forum, 2 weeks is much too quick, it can take that long [sometimes longer] for your body to know the current dose is sufficient for your disease before you drop down. Do that two or three times in a row and if each dose it not quite enough, you are likely to find yourself in trouble…
Thank you SO much,will be telling my rheumatologist man that I want to control my tapering( in a nice way of course as he is a sweetie) and I will be following the expert advice that has been offered to me.Just another little query for you ,Ihave started to get spots on my face and neck,never had them before.Any ideas please?Many thanks again Dorset lady.x
Actually Pred can cause acne, but would have thought if it were that, it would have come on at much higher doses … it could be that, or something totally unrelated.. sorry not much help 😊
Hi and welcome - no, definitely not alone now you are here. One of the UK charities actually made a DVD to explain PMR and GCA and their effect on us and called it "You are not alone". You can view it in 3 parts on YouTube or via a post here:
healthunlocked.com/pmrgcauk...
Don't be in too much of a hurry getting off pred until you have been on TCZ for a month or two - it also takes time to work. There are some doctors who appear not to be aware of that fact! In addition, TCZ only works 100% for half of patients, the other have to continue on a much lower dose, usually under 10mg. This is because GCA has at least 3 different causes for the inflammation that causes the trouble - and TCZ only works for one of them. If you have the others involved in your TCA, you will need some pred.
If you have raised eye pressures you should have been put on drops which do usually reduce the pressures quite effectively until you are able to reduce the pred.
Hello PMR pro,and thank you very much for your reply!Yes,I am on eye drops,pressure going down,they were 31 and 33 ,now 18. and 19.This taper is the worst,whether it is because rheumatologist took me off Leflunomide 2 weeks ago,or whether the reduction in pred,but last few days,bad leg pains,shoulders and groin pain,Will tell rheumatologist on Monday,maybe he will know if it is the drugs or another flare.Trouble is,I am in fear of becoming a hypochondriac with all that is going on!Fatigue is the worst of it all!There,I told you I am a moaner!.,
No you aren't - you have been badly managed. If your eye pressures are down to 18/19 you can stop worrying, just carry on with the drops.
You cannot just reduce the pred dose to zero because of another problem - all that will happen is that the inflammation of the PMR is no longer managed and the symptoms come back. And if you were on leflunomide as well and that has been stopped - that will almost certainly you need MORE pred to keep you symptom-free until you are able to start the TCZ, If only rheumies would go about things more gently and not be so terrified of pred patients would have so much easier a time.
Thank you PMR pro,learnt more from you in a couple of e mails than in the 16 months since diagnosis!Will tell my rheumatologist that I am not too happy about a 1 mg drop every fortnight especially as I have all these aches etc.Reckon about a half a mg would be advisable after seeing some of the other posts.Wish I didn’t have to start the TCZ. So sick of pills now,but know that pred is my friend,as some of the posters say!Cannot fault the eye hospital and rheumatologist for the care I have received but as you say,too quick to get me off pred.So nice to speak to someone who knows what I and others are going through.Feel like I am being accepted into a new family!x
What dose of pred are you down to now? Just looked back - 10mg? And not yet on TCZ? And you have GCA? I'm really concerned the rate you are tapering at will result in a flare of the GCA inflammation. And then you will need a lot more pred to manage it because even if you were on TCZ you can't rely on that alone.
Hi,I am currently on 7 mg,due to drop to 6 mg on Tuesday.Been off leflunomide for nearly 2 weeks.Started pains in groins,lower back ,shoulders last couple of days, Rheumy is contacting me next week to see if I should go on Tocilzumab.Dorset lady is of the opinion that I should taper a lot slower so I shall tell rheumy that I want to taper a hell of a lot slower!Think he was worried because of eye pressures and wanted me off pred quickly!Might have to make a correction to my post.When I said I developed GCA Dec22 I meant Dec.2022.
I think most of us would have assumed Dec 2022 reading post and your current dose, so don’t worry too much about changing it… it’s up to you. Maybe if/when you [or daughter] amend title you can do it then.
Aye well - your eye pressures are back to normal now and he is risking the GCA returning by trying to stop the pred so quickly. And it is a more present risk to your sight. If it were me I would want to stay where you are on pred - you are already showing symptoms of PMR in the last few days and that can be a sign that the GCA is still active. He needs to learn a bit more about PMR and GCA than he appears to know
Thankyou PMR Pro,actually getting sense from people who know what is what,rather than having to feel apologetic when I have to phone rheumys up when things are not right.As I have been told before,it is MY body and I know when things are not right!I will keep on the 7 mg and tell him I am staying on it for another month and drop each 1 mg every6weeks.Does that sound ok to you?Dorset lady gave me pearls of wisdom which has convinced me to come to this decision,as have you.So very grateful for all the understanding and advice I have been given.
It's better - but the dropping pred at that rate depends on the TCZ in my opinion.
Good morning to you!Raining again but at least it is warm here in Suffolk.Thankyou for your reply regarding the tapering.Pleasecould you be good enough to tell me what you would do if it were you?As you know,I am currently on 7 mg and nothing else.Dont know how long it takes to get issued with TCZ after rheumy agrees to it.X
Me? I'd stick at 7mg for as long as it takes to get the TCZ and the slightest sign of ANYTHING remotely GCA-ish I'd want more, probably 20mg to be honest. But that's me - eyesight is very very precious and the risks of GCA when raised occular pressures are now under control with treatment definitely outweigh that risk. I doubt your rheumy will agree but I also doubt he has met anything like the number of GCA patients with visual problems that I have through the forum.
Thankyou,,will listen to your words of wisdom!When I get the TCZ,would you recommend still tapering one mg every 6 weeks as long as I am well?I am absolutely overwhelmed by the number of kind people who have contacted me.I have felt so isolated in all of this,family make all the right clucking noises but NOBODY can understand what we all go through.I feel like I have been on a perpetual merrygoround.,...Being discharged from hospital and not being told ANYTHING about relapses etc.My fault,I should have contacted your wonderful forum a lot sooner .How grateful I am to you all,and I actually feel more relaxed about this whole thing now!x
I wonder what DorsetLady thinks - she hasn't any experience with TCZ as she said but plenty with GCA and tapering. You may cope with 1mg every 6 weeks, you haven't been on pred that long although you have been dreadfully messed about so the adrenal function may be easy enough to wake up. But I emphasise: TCZ takes a couple of months to work enough to allow reduction of pred for some and for half of patients it may not get them entirely off pred at all. It depends on YOUR GCA so don't let them bully you with "you are on TCZ, you can't have GCA symptoms". It isn't true.
Thankyou PMR pro.Been on pred for 16 months,yo yo ing as I said ,the first flare was at 30 mg the second at 7 mg so you can understand why I am getting a bit paranoid about it at present Will see if Dorset Lady sees my post to you,if not Iwill contact her.Another tip I picked up from you wonderful people.I woke at 2 am,took my omeprazole ,and at 2.30took my pred.Got up at 4.30,and felt so much better,Will have to buy Actimel drinks I think,as eating yoghurt in the wee hours seems a bit decadent!!x
Oh DL will see it - we two see everything and I did tag her just in case! Actimel is a good idea.
Take your omeprazole before bed, then you can wake and take the pred and go back to sleep.
Thankyou!x
As PMRpro has said plenty of advice on tapering - once I got to 7mg I only reduced at 0.5mg a time - and using my slow tapering plan.. which takes around 5 weeks to complete.
On odd occasions, like Christmas or a holiday or something I knew before would possibly be stressful, I stayed on current dose until that has passed. For example went to New Zealand when I was on 6mg… so didn’t attempt to reduce just before I went, or whilst away.
Some doctors don’t like it, although the sensible ones will, but you do have take control of your tapering whilst keeping them informed. Only your body knows when the time is right… and that’s not what the date on the calendar necessarily says.
Hi Dorset Lady,thanks for you recent post to me.So correct me if I am wrong,stay on 7 mg until I get TCZ and then reduce by 1/2 a mg every 6 weeks or fortnightly??Wish me luck talking to Rheumy next week!😱x
If it were me, I’d stay on 7mg until you get TCZ….but as PMRpro has said it does take some time for that to get into your system [she has experience of it, I don’t] ..so initially I would go for the 0.5mg reductions.
Once the TCZ is in your system and helping, you may be able to reduce more quickly, but that’s something way in the future, so cross that bridge as and when.
Thankyou Dorset lady but am I being thick here?Stay on 7 mg for about 3 months or so,then if I feel well,THEN drop half a mg,what ,every six weeks?Sorry if I sound stupid!x
Do you know when you are getting TCZ?
I’d try and stay on 7mg for now, and probably for 6 weeks in total [not sure how long you’ve been on it] - and then drop by 0.5mg…unless you have been contacted by Rheumy and know when you start TCZ.
I know it’s all a bit confusing, but really you need to stop thinking too far into future and concentrate on the now… and in that I’d stay on 7mg.
Thankyou Dorset lady.Will hear from Rheumy this week coming,so I do not know how long it takes to organise getting it.So I will tell him that I want to stay on 7 mg for 6 weeks once I start taking it and then drop by half a mg for 6 weeks and so on ,providing I am ok .Is that right?Sorry for being an idiot.(Maybe steroid brain fog eh?)x
That would be my plan -whether he will agree is another matter…
Thankyou,I can only try!He is lovely and I am sure I can “turn “ him to my way of thinking.x
Yes. 3 months to allow the TCZ to get in your system them drop 0.5mg every 6 weeks if tolerated. Though like PMRPro said above if it were me I would be inclined to up the dose now due to your existing pains having returned. Especially if you get your eye dr to approve it and follow you given your eye pressures. My concern about you having aches amd pains at your current dose is that inflammation will continue to build up while you wait to see if TCZ works putting you at higher risk of harming your remaining eyesight.
Hi Cranberry,Thankyou so much for your input.Will have a lot to discuss with the Rheumy this week,but with all your info,Dorset lady,and PMRpro,I am much better equipped to deal with what they say now.Do you think I should up my 7 to 8 or even more?Thankyou once again for your message,truly appreciated!x😘
PMRPro mentioned 20mg above, and she is the Pro! I am not familiar with GCA in particular, but usually for PMR without extenuating circumstances we say add 5mg for about a week and then drop back to the last effective dose. When did you last feel ok?
Hi cranberry,to be honest,I felt reasonable on 10 mg ,but because of the side effects of leflunomide cannot be sure if it is the withdrawing of that or quick tapering of pred.Such a minefield.No sign of jaw claudification ,just lower back ache and groin ache ,and a little stiffness in shoulders.Am keeping a very close watch on it,and if it does get worse,I will jump up to 20 mg .Feel I have to listen to forum more than the “experts” .Many thanks for your concern.x
PMRPro mentioned 20mg above, and she is the Pro!
Yes she did, but if you read her comments again you see she mentions the 20mg in relation to any GCA type symptoms - I'd stick at 7mg for as long as it takes to get the TCZ and the slightest sign of ANYTHING remotely GCA-ish I'd want more, probably 20mg to be honest.
Angelsmummy doesn’t appear to have any GCA symptoms at present, she was querying speed of present taper and seeking information on TCZ.
Hi, your main correspondents on here so far are much more experienced and knowledgeable than I, except for this bit I can add, ie that I have GCA too, but have also had a year of TCZ. I had reduced Pred very, very gradually, ( I obviously agree with the others that you would seem to be reducing much too quickly ), and a few months after my year of TCZ finished I had reduced to 2mgs, reducing 1mg every 5-6 weeks. At which point I had a flare, double vision back, returned to 40 Pred. Now on 12 and a half, reducing 1mg a month again, but with added Leflunomide this time. So far I seem to tolerate it ok. That’s all, really… nothing helpful to say except yes, solidarity, and each person’s response to meds, and stages of illness does vary from one to another. Good luck for getting TCZ.
Hello Frewen,thanks for your reply,glad you are tolerating leflunomide ok,lucky you!It gave me diahorrea and the most awful fatigue,and was very tearful a lot of the time..So sorry that you had a relapse after a year on TCZ,must have been soul destroying for you?Seems that there is no real sure fire cure for these dreadful diseases is there.?Just got to accept that we are not alone in our struggles(for which I am so grateful for since I joined the forum yesterday) and we can support each other.Up until I contracted GCA,I had never heard of it ,or PMR,just shows how little was known about it in the wider public.Dont think any of my drs knew much either,as after countless visits to them with neck,ear,head and groin pain for nearly a year,I asked to go private and even in ENT,they just told me it was facet joint problems!Never mind,what will be will be,cannot reverse anything can we,just got to get on with it and stay positive.Hope you carry on being well,and Thankyou again.x
You're not a hypochondriac, Angelsmummy. GCA/PMR makes us acutely aware of symptoms and changes, which is good. Many of us keep a diary or some kind of log. Glad you like this new family - I'd be lost without it!
Hello Random,yes,I too keep a diary of BPressures,good days,bad days,mood etc.Keeps things on record in case I forget!Glad I am not a hypochondriac!Just been too long with no proper advice and boring the pants off my poor husband and family!At least now with my new “family” I can off load ,thank god!Feel SO much better today knowing that help is there if and when zi need it.God bless you all!x
hi Angelsmummy. Welcome to this site and, please remember, you are NOT alone. We are all have to offload to and, believe me, there is some really good experts on here to give you the relevant advice and answers.
Don’t be afraid to offload at any time. x
How right you are Doraflora,the help,support and just general good will to me since yesterday has been overwhelming!I am truly grateful to you all!x
Oh, bless you. We’re all in this together!
That we are,and such a comfort it is as well.Have had so many lovely replies ,have now got cramp in my finger replying to them all!But well worth it!xx
Sounds very similar to my experience. I was on prednisolone for 15 months and Tocilizumab for 18 months. No side affects from the Tocilizumab. Went onto Methotrexate for a year as a precaution when the Tocilizumab was withdrawn. Have been fortunate in not having any relapses so far and learnt to accept loss of sight in one eye. Best wishes.
Hi sequeluk,another good report about Tocilizumab!So glad you have not had any further relapses,and have learnt to accept the loss of sight in one eye.It is hard though isn’t it?Trying to prune rose bush stems that are not there,spilling things ,not being able to decorate cakes nicely as I used to,but slowly, slowly things get a bit easier but how I wish I had my eye sight back,as I guess you do?I am just grateful that I have sight in the other one. So glad as well to have found such wonderful people on this forum.I have got to admit ,I have been very down about it all,especially as my husband is not too well,but joining this forum has given me such a lift! X
Weeds are my bete noir - but as you and others know, there is so much you can still do -
healthunlocked.com/pmrgcauk...
Haha!I have 3/4 of an acre which is my pride and joy but as you probably know Dorset Lady,depth of vision and only seeing in 2D is a real pain in the backside.I used to do a minimum of 4 hours every day,but because of the fatigue,an hour wipes me out!Just hoping levels improve so I can get back to doing what I love,even if not nearly as much!xx
Fatigue will improve… but you still have to go through the adrenals starting to wake up, so probably not for some time.
Ah,something else I have learnt!Just hope by the time that happens ,I haven’t popped my clogs!x
Yes, pruning hedges and bushes definitely a challenge along with doing other close-up work. Good luck with the Tocilizumab and hope it allows you to get off the prednisolone without suffering any further relapses.
Thankyou sequeluk for your kind words.My rose bushes have not had a decent prune,I would not let anybody touch them but am afraid to say ,their shape is now a little Je ne sais quoi!!Never mind,plenty of buds appearing so I haven’t killed them.Maybe a feed of pred might do them good! X
So sorry to hear about your sight. I contracted GCA in Dec 2021 during the Pandemic. I had been mildly struck by an object on the side of the head and thought I had a neck injury, which a Specialist could not determine. My Doctor was wonderful and rushed me into Hospital as I have amblyopia (from birth) in one eye and the swelling was on the side of my good eye. I started on 60mg of Pred and slowly reduced but suffered flareups. I started on TCZ in September 2022 and stopped a year later. I had a flare up over last Xmas and my Rheumatologist was not happy with my blood markers, so I have gone back on weekly injections for the last 3 months. I have no after effects from them and sticking a needle in yourself is easy after the first one (specially if you have a bit of "loose timber" on the side of of your tummy!) Wish you well
Hello Niblick,Thankyou for messaging me,and sorry you had a flare and are back on the jabs!Guess there is no miracle cure,just everybody different and reaction to drugs differ from person to person.As for the “timber” ,have put on 1 st.4 lbs with the pred but have managed to lose 4 lbs by not being greedy!When I was getting down about it all,I would have a LARGE treat of something ,but am getting more disciplined now!Plus getting below 10 mg apparently is a key to losing a bit I have heard.Hope you are continuing ok,and glad that the jabs are not too painful!!😳x
Also, if you can find a good opthamologist who understands eye pressures, perhaps glaucoma specialist, and does the range of tests on the back of the eye, it may be helpful because then you have a digital record of changes over time. I have a specialist optician who assesses me every three or six months dependent on pressures and other signs. So if anything eye-related occurs they have a baseline and a good understanding of your eyes. It is fantastic reassurance.
I go to my eye clinic regularly. It was discovered that due to thick cornea the usual puff test is not accurate. My opthamologist says my right eye is plus 6 and my left plus 4. So a reading of 25 in my right eye would really be 19 and in my left eye a reading of 25 would 21. All interesting info.
Hi Koala Jane,Thankyou for taking the time to message me.I guess I am very lucky with my eye clinic,very regular check ups for the GCA damage,eye pressures and macular degeneration.They are all happy with me,as is my optician so fingers crossed.Hoping you are dealing with your problems ok ?x
Hi Viveka,,yes I have a wonderful team at my eye clinic who I see on a very regular basis.Cannot fault them,Back to glaucoma clinic in 6 weeks or so,just had eye pressure test so no worries on that score at all!Had an ocular CT scan last week.All good!Keep safe!x
You asked about input on Tocilizumab. I can only report my experience, which was very positive. I am assuming you are in the UK and at the present time, TCZ is limited to 52 weeks' treatment. I was fortunate that this was extended during the pandemic and I had 2 years on TCZ, during which I felt really well. It obviously dealt with my GCA-LVV (inflammation in my aorta and its branches), but as PMRpro has said, it doesn't help everyone. If the restriction is lifted, I wouldn't hesitate to use it again, but that's because of my previous experience. TCZ enabled me to reach zero pred, but after 6 months the inflammation levels built up and I am now back on pred.....!
In the meantime, I wish you well with your taper and discussions with your Rheumatologist. 🌺
PMR 2016
GCA-LVV 2019 (but probably from 2016)
Thankyou Rugger,yes,I am in the UK and it seems that the drug is really helpful.Guess that is my next step and pray it works.Sick of the yo yo ing of pred and the awful effects of Metho and leflunomide.Do hope you are managing now you are back on pred.I was longing to come of it but now I know it is keeping me well.Look after yourself,x
Thank you A/m - I'm managing well (after 8 years! 😀). I went back on 5mg for 5 months after the 'relapse' and that suits me well. I've tried to taper lower, to 1mg by last Christmas, but my blood tests showed the inflammation was up again, so back up to 5mg in February and now trying 4.5mg. If you are on 7mg now, you could try tapering at 0.5mg every 4 weeks and you might be off pred when the 52 weeks of TCZ are up! Having said that, Rheumatologists and the charity are lobbying to lift the 52 week ration, so things could change in the next year. 🤞
I do try to look after myself and I remain positive and optimistic of going into remission one day........! You look after you too. I was so sorry to read of your loss of vision. 🌹
Thankyou Rugger,and for your advice.Yeh,the sight loss was the worst,Consultant came to my hospital bed and said “ yes,you are blind in the eye,it won’t come back,and he walked off!I was devastated,especially being on my own.!Would have been nice if a nurse could have been there for a short while with me,but guess they are rushed off their feet ,poor devils.Got to be thankful for one eye that works,I cannot imagine being totally blind.It is crazy that just half a 5 mg tablet can make a difference isn’t it?Best I am extra careful when I cut them in half now!😱Do hope you stay well,it is certainly a game of Russian roulette isn’t it?x
💬 can't print what I'd like to say about that Consultant! 🤬 Something akin was said to me 35 years ago re my late partner who was in a coma........ I remember his very words to this day.
My Rheumatologist is an amazing person and good to read yours is a "sweetie"!
Hi Rugger,sometimes think that some of these “Top Bods” need to have someone push them off their pedestals!No bedside manner at all!Saw him again in outpatients dept and his first words to my daughter and me when we sat down ,were”You know this disease can kill you don’t you?” He then proceeded to tell us that my macular degeneration in good eye ,could leave me blind in about 5 years!I got very upset,my daughter got up and put her arms around me and he told her to leave me,as I have to come to terms with it!!!😱When I had an appointment with the RNIB,who had an office in our eye clinic,we told her what he had said and she knew exactly who I was talking about and said she was going to put a complaint in about him.Apparently he was renowned for this attitude.Compassion was certainly a word not in his vocabulary!Have never seen him since.He has either gone,or is giving me a wide berth!So sorry to hear about your poor late partner and what must have been said to you.Dont they realise what people are going through?Obviously not.Lets hope they get the same treatment one day eh? Thanks again.x
I worked in the NHS for nearly 40 years and I am ashamed that you should have had to suffer his arrogance and uncaring attitude. Let's hope he has gone for good following the RNIB complaint - I'm sure you won't have been the only one.
Today, you should have a day of rest for your typing fingers and your eye - no need to reply to me. x
Dear Rugger,of course I will reply.Your kindness deserves one!Have had a really good couple of days,energy levels GREAT,but a bit tired today,common problem with all of us.Just got to take it in our strides now .Weather shocking here,torrential rain,when will it ever stop!We have fledgling blackbirds in the garden and they are so funny.They run out to see if the other birds have knocked anything off the bird feeders ,then run in with their prize!Lovely sight ,will be sad when they take off and leave us.Do hope you are ok Rugger?Fourty years in the NHS,bet you have seen so many changes over the years?Just feel so sorry for all the Drs,nurses who look after us lot,and the strain they are under.We are very lucky here in our hospital ,and because of the nature of the disease,I have been treated so well,apart from the ???? at the eye clinic.Guess they get our problems wrong at times,but generally ,they are only a phone call away!Do hope you get good treatment if needed?Time for a cuppa I think!xx
You are so kind to reply to all your replies - no wonder you're tired today! (You can just click on the 💙 below someone's reply and then they'll know that you 'like' it!)
Raining here in Yorkshire, after a reasonable day yesterday when I managed to do a bit of weeding. Our garden birds are singing away - it really does lift the spirits.
I am fine, thanks and have a wonderful Rheumatologist. You may have seen her name mentioned on this Forum - Sarah Mackie. I am so fortunate to be in such good hands. I retired 16 years ago, so I'm well out of it now, but getting my moneysworth on the other side! 😃
No,sorry Rugger ,have not seen her name,guess I should delve into it a bit more and see her input on our conditions I sometimes feel bad about the number of appointments I have had in 16 months,but like you,have worked nearly all my life so just getting a bit back I guess.,Though rather I didn’t have to!!Please don’t reply if you don’t want to,only idle chat I have written here.,x
Hi, I was on Tocilizumab to help with tapering the pred for over a year with no unpleasant side effects. There was an extension allowed because of the pandemic plus I had some short gaps when I got infections and when having covid and flu jabs as my neutrophils were affected. I'm sure it helped me reduce the pred without getting flares, however I still tapered very gradually. I have both PMR and GCA. Hope this information helps reassure you about taking it.
Hello PastelsinArt!Guess you are an artist by your name?Thankyou for your input on TCZ,most reassuring,I definitely will go on it,seems that most people on it do well.Just hoping it will for me as PMR pro said that GCA patients have 3different things associated with it,and it is possible it might not work but nothing ventured ,nothing gained eh!Like you,I will be on a slow taper ,a lot slower than what my rheumy recommended but after having 2 relapses could not face a third so quickly.Onwards and upwards to us all I say!x
I would have gone off the rails without the wonderful people on this forum. So sorry you are having it so rough. I have stuck with pred although my brother tried metho but ended up back on pred but I don't know the story. Hope you get the help you need.
So sorry about your vision. After three episodes of double vision I went to the ER and after determining I wasn't having a stroke they put me on a high dose of Prednisonse.
You are not alone definitely. I was diagnosed in June of 2023 and was on large doses of Prednisone but my doctor also put me on Actemra (Tocilizumab) infusions. Have now reduced off of the prednisone as it was affecting eyes (pressure), liver, and glucose. My inflammation levels are staying down and doctor agrees Pred. not needed. I have tolerated the Actemra very well and it seems to be working. Hang in there. I hope this drug works for you but i understand there are other biologics if it isn't affected.
Thankyou Abby for your kind words.It seems that this drug is a LOT kinder than Metho and Leflunomide.Hoping it works for me!It is a long hard journey but am hoping to see light at the end of the tunnel in time.x
Hello Angelsmummy. I've been on Tocilizumab for 10 months now. I've been able to taper the prednisolone slowly and steadily without any flares. I've had no side effects from the TCZB except for increased tiredness the following day. My rheumatologist here in Wales said to reduce the pred by one mg every two months. So they do not expect a faster taper. I am now on 6mg. The same reducing regime was prescribed by my previous rheumatologist in London. I prefer to reduce by half a mg every month. I have been told to remain at 5mg until I see the rheumatologist again. I think my tiredness may be due to poor adrenal function, which is to be expected. I hope TCZB proves helpful to you and that you get the best management of your condition.
Thankyou AliDej for your kind message.It is all making me feel more positive about the whole thing listening to people like yourself and many others.The light at the end of the tunnel now seems obtainable,but as Dorset lady and PMR pro and others tell me,not to rush the taper,it will take as long as it takes.Just got to convince my Rheumy now.!🤞🏼x
I've been on Actemra (TCZ) for more than 3 years, a self injected shot every week. While it scared the heck out of me on account of stories and the warnings and I have had plenty of experience with colon issues - I had 8 inches of my colon removed 10 years ago. Still, I have tolerated TCZ very well.
Thankyou Dixiec ,another positive forTCZ!Just hope I am as lucky as you when I get it.Thankyou for your reply.x
Hi, and welcome. I am so glad you took the plunge and jumped on board. My situation in 2019...is exactly like yours: misdiagnosis and loss of sight in one eye in August 2019. I'm in the States. Initially, I was put on 125mg pred daily and hospitalized (I'm 83 and was on a maintenance dosage for seizures, my last seizure being 47 years ago. The super high pred watered down my seizure meds.... I felt the auras but I never had a seizure.) in September 2019 because my markers were still 70X what they should be. In a few months, I was put on 80mg of methylprednisolone plus Actemra.
My eye pressure, sugar, and cholesterol all went up with the pred, but they came down, too. I would have 'lost it' if it hadn't been for this forum. The support is needed and saves your sanity—it did in my case. Your eye pressure sounds under control now.
My rheumy hesitated with the Actemra because I had a history of bleeding ulcers and diverticulitis, but I was told the risks and opted to do all I could to save my eye. I have not had one single side effect or issue with the Actemra, and I still take it weekly, not once. If I get off pred I'll still be taking Actemra for a while per my Doctor.
I'm shocked that you are on just 7mg. I did not get to 10mg until 2024~! with Actemra. I'm no Doctor, for sure, but even tapering now....I'm finally at 1mg but have tapered by .5mgs and stay on that dosage for 4-6 weeks. I would get to 20 a few times and zoom..right back up to 40mg. I'm not surprised you are yo-yoing a lot. It sounds like so much is being expected of your body at a fast pace....... The slow one wins this race. Please take good care and stay with us!!💞
Good morning Grammy80.Thankyou for your kind message.After reading everybody’s comments about the fast tapering which has basically caused me to have 2 flares,I am beginning to think that even though my Rheumy is a sweetie,,he like many others do NOT know too much about GCA PMR apart from the diagnosis! My poor old body feels like it has been in a car crash sometimes.Because I have back problems,I sometimes do not know whether the hip girdle pain I get is that or PMR.Such a difficult thing!And not having anybody to help me in that way has been hard.Like you say,thank god for the forum.,At least I know there is help for us all when we need it!Have got to admit,I have had some very dark days when it has all been so overwhelming and have had bad thoughts of not being able to carry on but because my husband is unwell and I have my beautiful animals ,I carry on.There are a few good days,but a lot of bad days.Sorry if I am sounding depressive but up until now I have felt totally out of my depth with it all.I am so glad you are responding to the TCZ,looks like it does what it says on the tin!!Have you lost the sight in the eye completely and joined the ranks of us “pirates”.Anyway Grammy,Thankyou again for your kind words of support.Much needed at the moment!Please look after yourself as well!x
Yes, I am a bona fide pirate! There were times in the beginning when I actually wore a black cover over the left lens of my glasses.(Amazon) When I lost sight in my left eye in 2019, I definitely felt more visually challenged than I do now. After all, it is quite an adjustment. Even sometimes now, I find that unconsciously I close that eye...I think it helps my depth perception. I don't really know, but I've adopted the attitude of 'whatever works.' Recently, I joined a crochet group...I used to paint and didn't think I would again, but I have for a few years. But you have to take it in steps and be as good to yourself as you can.
I would definitely agree that the scope of the disease, after the diagnosis, escapes many with MD after their name. My old primary care physician said, "You are too dependent on prednisone.'' He showed his ignorance, and I showed him the door. My rheumy is all about slow...slow to avoid a flare.
'Being hit by a car' is the way I used to describe my body and the way I felt, too. I understand the mental and physical stress you are under. My husband has dementia and is now in what I call 'a conciliatory phase' because he is aware of his condition and shows more appreciation for me; he feels vulnerable. I'm sorry your husband is ill and that is also heaped on your plate. Be kind to you..do what you need to do to be there for yourself and him......so that means you first sometimes.💞
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