Just wondered if anyone with GCA has stayed on low dose prednisilone long term as they couldn't tolerate any of the drugs like MTX and Leflunomide and what dose was used please. Also whether it was possible to get off steroids eventually. Thanks
Low dose of Pred long term for GCA: Just wondered... - PMRGCAuk
Low dose of Pred long term for GCA
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HappyDiamonds
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DorsetLadyPMRGCAuk volunteer
Eminently possible, quite a few still on forum, jinasc , SnazzyD and myself just to mention three are Pred free after GCA. Jinasc been off the longest, me next, then SnazzyD. Not 100% sure about others, but I was never on any other drug - although don't think they were either. All about 4-5 years on Pred.
I will have been on Pred 3 years in May, down to 3mg from 60 and my TCZ is running out. I have tried MTX & Lef but been very ill with both and they have been stopped. I also tried azathioprine but couldn't tolerate the side effects. Ive had such a rough time with Lef I really want to continue with Pred only even if it means I will have to increase my dose when TCZ stops (injecting alternate weeks) and taper very slowly afterwards. I have no idea how much I will have to increase but would be happy with 5mg daily. Somehow I have to convince my Rheumy this week of my wishes as they keep telling me I am risking further spinal fractures if I don't get off Pred altogether and I need one of these other drugs to do it. One of the Registrars did suggest during a phone call that I could have to stay on low dose Pred indefinitely. I need to find a way of having some quality of life as I don't have that at the moment.
It's a great shame that TCZ is only authorised in UK for 12 months [but that has been discussed many times so won't go into that] - but it is what it is.
When it finishes, I realise you have to think seriously about just staying on Pred [albeit slightly higher as you say], or adding MTX I guess - I think I know what I'd do.
Even if you need to go higher, you are very likely to get to zero within the same time frames as those I've mentioned. I was Pred for just about 4 & half years, but had 18 months undiagnosed prior to that... so quite deeply entrenched before treatment began.
Ophthalmologist who looked after me initially [you know story] - said Pred for at least 2 years, probably nearer 4, maybe for life.. he was pretty much spot on.
TCZ authorised a couple of years after remission.
Just as matter of interest what is your situation regarding spinal fractures...? sorry if you've explained before.
Somehow I have been made to feel that I am unusual in being on Pred this long with GCA and without this forum I think I would be really worried. I had 2 spinal fractures and a sacral insufficiency fracture in 2021 and osteoporosis and osteoarthritis in the spine after less than a year on Pred despite a good dexa scan at the beginning. Been treated with Zolendronic infusions and no further fractures since. Due a second infusion in Spring.
Rubbish to first sentence...not in the least unusual.
Perhaps you are one of the unlucky ones with spinal fractures etc, but as you are on Zoledronic infusions you are protected as much as you can be...
Guess you know all about ROS site - theros.org.uk/
Yes thanks I do and the team looking after me also advise and help at the ROS. I know nobody can make a decision for me but I was hoping that either you or Pro would say if you thought I was being downright stupid in my thinking. Maybe I won't need to make a decision and be offered an unexpected solution. Thank you for your input
Well we might not have used those specific words…..but …😊.
Both DL and jinasc - and a load of others on the forum - were on pred for 4 or 5 years, In all the years on the forums I think I know of only a couple who were off pred in 2 years, one with GCA and one with PMR. The one with GCA went on to develop PMR 4 years later!
There are plenty of rheumies who recognise it lasts more than 2 years. Christian says he has loads on long term pred but most are at a much lower dose than I am. Trouble is - when you come against one who doesn't accept that, you are struggling.
Hi there, as I may have mentioned before, I’ve been on Pred for GCA for 2 and a half years, currently at 6mg, also half way through my year of TCZ… down from 60 twice. Reducing half a mg every three weeks, with everything crossed, but not confident about ever getting to 0…
To me its not the end of the world to stay on a small dose, quality of life is more important but I do hope you achieve your aim.
I was diagnosed with GCA in October 2020. I have had very occasional follow up since the early days and have largely self- medicated , using Dorset Lady’s programme of Prednisolone reduction. It is now 10 days since I took my last 0.5 mg. So far, so good.
We think the slow taper is essential and there are people who do get to the end relatively quickly but the range is from 2 years up ...
That is really good progress! Started on pred August 21, using DSNS tapering, and now on 5 to 4.5. ...so you give me hope. Hope you continue to do well. 😉
Hi there Happy Diamonds, Just read your post this morning and am very sympathetic. There seems to be a movement in UK to get patients off Pred at all costs with little regard for risk:benefit ratios.Apologies if this post is not relevant or realistic, but like you, having had horrendous reaction to methotrexate my GCA/PMR quality of life was turned around once I started TCZ and while it's a stretch on a pension, I buy it on a private script (started Pred 60mg urgently and so my bloods didn't qualify for subsidised TCZ even tho GCA was confirmed by PET a couple of weeks later) and wonder if this is worth considering for you as you are already reducing and might not need it much longer? Here in Aus we are used to paying a token amount for our subsidised meds and while 850$ (not subsidised) is a huge amount for TCZ each month, my life is once again worth living and well worth juggling the budget if at all possible. (15mths now)
I should also mention I saw my GP last Monday for increasing back pain, got xrays that arvo and she rang me Tuesday morning to say I have 2 compression fractures in L5 and L1.... probably from lifting a kayak back onto the rack!(only just got back into it and not strenuous, more just paddling round looking at the real estate on Sydney harbour) So in brace and limited activity for a bit🤦🏻♀️🤷🏻♀️😥
I am now on 4.5mg pred after starting Aug 2021 and no pressure to fast track reducing once Rheumy accepted the logic of DLs regime vs the insane speed on the TCZ trial!
Another option is speaking to the company, or getting your Spec to call/write re getting cheaper TCZ through them.
I do hope you find a solution, quality of life so important when most of us don't have too many decades left!
Again, apologies if this is not an appropriate option for you.
Best of luck
Angie
850 Aus $ is just under £500, £6000 per year. The cost of TCZ was certainly not that low in the UK a couple of years ago.
Ah I understand it may be different in UK. Its just that quite afew posts mention how disruptive it is to have to stop TCZ after their free year, and I assume it is possible to continue on a private script for the little longer it might be needed.It does mean egg on toast dinners and no 'treats' but huge benefits lifestyle wise and for me, the ability to exercise more as Pred is reduced. Sounds like it might be cheaper here too. Sorry. probably not relevant to UK.
In Europe it costs about £15000 a year - the price is marked on the boxes I collect from the pharmacy and if I were to pay for it myself, that is what I would be charged,
It was an option I considered as I was very reluctant to try Leflunomide because one of the side effects is peripheral neuropathy. If I wanted to pay for TCZ I would have to go to a private consultant and the hospital I have been under would no longer look after me. I would also have to then pay for all treatment, bloods, x-rays, scans etc. and follow up appointments. I had the idea that injecting fortnightly, (as I am now to last out the injections I have left) for a year would be similar to paying for a hip replacement operation or similar. I believe TCZ costs £1000 a month. Also if I paid for a year there is no guarantee I wouldn't relapse at the end of it and be back where I started, but broke 😀. Im glad things are working for you though and sympathise with you regarding the spinal fractures as Ive had the same, mine happened just opening my curtains in the morning. Hope they heal quickly.
Oh gosh, I'm so sorry for my ignorant suggestion, I had no idea it was all or nothing in the NHS system. How frustrating ...we have alot more flexibility here.Just regarding long term Pred, I have several friends comfortably continuing on 3mg of pred daily with everyone's blessing over many years. Two also on Bisphosphonates. I'm just osteopaenic so hoping to heal ok. (Sunshine a big help here, for mind and bones)
Wishing you all the best
The situation about one year only on TCZ is that NICE is being pressured to allow GCA patients to be prescribed it for longer but a decision hasn't been made yet and probably won't in time for me. If I went ahead and paid for it and then it was made available on NHS I wouldn't be allowed to go back and have it free. Please send some of the sunshine this way, its absolutely freezing cold here again this morning and icy underfoot.
Hiya - couldn’t tolerate Methotrexate - I have been on steroids since PET scan showed GCA in 2013 - started on 60 now maintenance of 5 every other day … hope to get off them one day but taking it very slowly!
Thank you that is interesting and I hope you get off them eventually. Did they cause any bone damage or other serious side effects?
I have stomach problems but always had a sensitive tum - better now on low dose - have been on calcium magnesium K2 etc to help bones-do have osteoporosis but had the start of that years ago - have avoided biphosphonates so far - still considering - I have been on low dose for quite a while so hope not too much damage!
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Loads of people DO get off pred, especially those with GCA, it seems to be easier than with PMR for some reason.
However - they will have to let you take enough pred since the UK system doesn't allow for long term use of TCZ for us. Have you not been offered bisphosphonates or the like for the spinal fractures? There is more than one way to skin a cat.
Is it GCA symptoms that return or PR as part of GCA? Taking you off pred for GCA is risky - and pred is the mainstay for GCA/PMR and works reliably when you can't take anything else.
I had an infusion of Zolendronic Acid and due a second one this Spring and touch wood been fine. I had 2 spinal fractures in July/ August 2021. I have had GCA flares the last one when I stopped TCZ for 4 or 5 weeks to have an operation last July and inflammation was confirmed by ultrasound (prior to that Im sure it was tapering under pressure but I was too naive to realise it)Rheumy was disappointed that I relapsed on missing only a few injections and that's when they started trying me with various other drugs so they worked before TCZ stopped. I honestly can't take either MTX or Lef no matter how much I want off Pred. I do get some PMR type symptoms but a steroid injection in the bursa in November helped me greatly for now.
"so they worked "
Defeats me - they DON'T work that well, especially for GCA. If they did they would use them sooner. So why should they work now because NICE says you can't have more TCZ? I offered to try LEF but Christian just said no, we'll use what we KNOW works.
I like your way of thinking! My GP phoned me yesterday as some abnormal results in my blood test, platelets, white blood cells/neutrophils but more specifically ALT was at 89was his concern. Im thinking it could be to do with my not taking my thyroxine reliably recently as I was on 8 doses of meds for my esophagitis & gastritis which made it impossible to allow 2 hours between everything im on. I suppose it could also be TCZ which will complicate things further. As an afterthought, can I take my 2 adcal d3 together instead of 1 am and 1 pm?
They are better separated as the body can't absorb more than about 500mg calcium at a time, How about vit d taken separately (I think it is more important) and maybe just one combined supplement? How is your diet in terms of calcium? I don't take calcium any more because of urinary tract symptoms. ... Calcium tablets caused OH awful gastric problems.
Normally my diet is good and I have plenty of calcium but since my experience of Lef. its been awful I just couldn't eat. Christmas Day I had a cup a soup (b.awful). When I sought advice as not being enough hours a day to leave 2 hour intervals in everything I take GP said to miss adcal a couple of weeks wouldn't hurt. Vitamin D checked and was 55 so ok. I would prefer to take vitamin.d alone if that would enable me to take my doses of meds for digestive problems easier especially if calcium could be contributing. What should I take please?
Oh dear - I wasn't greatly enthused by my xmas dinner but it wasn't that bad!! If all you can cope with is soup - get some better quality fresh ones and freeze them in portion sizes. I calcium supplement a day is a good start even with a rubbish diet - that is you halfway to what you need already.
What can/can't you eat at present?
medicalnewstoday.com/articl...
gives a basis for soups with lots of calcium if you can't cope with dairy, If you CAN eat dairy - how about broccoli and stilton soup?
Porridge made with milk for breakfast or greek yoghurt as easy to swallow, mashed potato with an egg on top was another but my favourite food, Cheese, has been a no no for nearly 3 months. I can now manage soft bread with crusts cut off so can get a small sandwich down. Also been forcing myself to eat very small amounts of chicken, prawns and white fish All low fat foods that are easy to swallow basically. I can now also drink a cup of tea without heartburn but not coffee. On occasions I did make soup in a soup maker. Things are improving but its been very trying especially through Christmas. It became fearful to eat, and I just didn't want food anyway. Will take 1 supplement a day until I can reduce the ppis, h2s and gaviscon further. Thank you again.
My daughter sent me a soupmaker when OH was ill but wanted 3 course meals! It was brilliant. Then the daughter was here, I put soup on to cook and at the end she decided it wasn't smooth enough so (I suspect) overdid the blending and it blew a fuse! Not covered by guarantee here 
Oh well.
They were very popular a few years ago but the prices have rocketed. My favourite gadget is my air fryer couldn't live without it, its a 2 drawer version and I can cook practically anything in it (not liquid) no fat needed and I set it up to finish cooking both compartments at the same time. Heats to temperature within seconds, cooks in much less time than my oven and there is hardly any washing up. My kind of cooking these days.
I considered it but don't really have room in my tiny kitchen and wasn't convinced - tell me more.
So have I, but like you not totally convinced…. I think they have become very popular in UK over last few months because of the cost of electricity… but reviews are mixed.
You can buy small basic ones that do a brilliant job, have a look on A. One that I bought first had 13000+ good reviews. Only had it a week or two and fell in love with the ease, quickness and how well it cooked so got a better one and gave the first one to my step-daughter. Im hooked, even boils an egg, you just put it in the drawer as it is on 180 for a few minutes and take out a soft boiled egg you can toast your 'soldiers' at the same time. Other simple things like toasted sandwiches, jacket potatoes (crispy) for snacks. But it comes in to its own cooking fish, meat, vegetables etc. It has flavour, doesn't make the kitchen smell, very little washing up, cooks at a lower temperature and about a third off oven time, so saves money too. Im no longer a keen cook so works well for me.
Air fryers are brilliant!
Do you think it depends on the style of cooking/the model you choose?
We have ours quite a few years, there wasn't a fantastic selection then, they were a new kid on the block. Ours is made by Philips. Just read reviews I guess. They all seem to do the same job 👍
What DOESN'T work well in one?
I don't really know, you should look at reviews if you are interested in getting one. Ours must be 8 years old and is just very often. You can fry foods (and I am vegetarian) with just a teaspoonful of oil. Or roast foods etc!!!!
You can't cook liquid based foods such as soup or casseroles as cooking is done by air. The air "fryer" bit is confusing as you are not frying at all.
No I know that - just wondered if one was worth it for me. I suspect it wouldn't be any more benefit than my tiny grill/oven out on the balcony.
Would like to see one in operation ...
All I can say is once I started off using it I wanted to do everything in it and now hardly use my oven. It hasn't ended up in the cupboard in the garage with the bread maker, food mixer, slow cooker, George Forman grill - you get the idea 😀 Have a look on YouTube.
Can I ask why are you taking at 1am & 1pm? 1pm I can understand ….
Most take after breakfast ( except if taking taking other meds which need to leave time in between) -and after evening meal.
Advice on box is to take twice daily -hence the packaging details -so not designed to be taken as one dose…. think you probably need medical advice on that.
Was told to take them like that but please see my reply to Pro - on 8 doses of digestive meds a day complicating things so I concentrated on Pred.
okay -thanks for clarification .
hi just to say I totally empathise with you over the methotrexate and leflunomide. I was basically forced to try them prior to Toc in the first place and then leflunomide when I got represcribed Toc , on both I had no quality of life. You may find your consultant can get further time on Toc for you if he shows you relapsed very quickly when off it. Best of luck, I think we all need it
Thank you. Ive often been told that one or the other of these 2 drugs suits people but both made me very ill. I tried methotrexate and azathioprine before having TCZ and the Lef. most recently, still haven't got shot of my GI issues from it. When the Rheumy says "you have failed 3" I feel terrible, as though Im a bad patient. I do know that they would continue prescribing TCZ for me if they were allowed to though.
It’s not you that has failed, it’s the drugs that have failed you….and a crass remark from Rheumy which is totally unbelievable - and unprofessional.
Hmmm..... the medication failed to help you.
I expect I am not alone at feeling highly aggrieved on your behalf because of that inappropriate comment.
my consultant has a very similar attitude, it’s as if he thinks I don’t want other treatments to work. With both methotrexate and leflunomide I was okay for a short while, but they seem to build up in my system and the awful side effects just get worse. I’m sure if they collated the comments patients make they would establish a pattern, that way they wouldn’t be able to make out you are in a minority when they don’t suit.
Yes I was fine on the drugs for a little while and then wham and that was only half the dose they wanted me on.
It's the term they use for a drug that doesn't work for you - not you personally. And while the rheumy was out of order to put it like that to a patient - they forget Joe Public doesn't understand they way they use it,
The rules have to change though - it is blatantly obvious that the one-year-rule is crackers.
Its the same when you get a copy of the letter they send your GP after each hospital visit. The first time I read the expression "Mrs HD denies having any GCA symptoms" I thought hang on a minute Im not lying 😀. I suppose its that vulnerable feeling we have relying on them and feeling so poorly.
And "nothing remarkable" on a scan when the patient has severe symptoms. It is all just the style they learned to use, handed down for years.
I am still on 5mg of pred after 6.5 years - diagnosed with GCA, started on 70mg of pred tried methotrexate after 9 months but felt so ill taken off it after a few months. It was the early days of Toczimulab (can never spell it!), hoped to be put on it when I got stuck at 12mg but my NHS Trust in Bristol decided I didn’t qualify for it. Slowly tapered using the very slow method devised by our wonderful Dorset Lady but reducing from 8.0 to 5.0 utterly knocked the stuffing out of me. Have twice had the adrenal s tested & at 5mg there is a tiny bit of function & I know from having seen Endocrinologist that Until I get lower nothing will happen - I feel so unwell with utterly overwhelming fatigue when I try that I have decided it’s not worth it. I am 78 years & my husband who is 84 & fit & well loves travelling & seeing friends that I need to be able not to spoil life for him (he has been incredibly supportive & very understanding over my condition). In the last 2 years both my daughters have had breast cancer so worry & stress has a big impact.
I have had 2 infusions of Zoledronic acid now as have osteoporosis but get out & walk my dogs most days so fairly active. So my endocrinologist has left it to me to decide what I do & feels 5mg of pred is OK, in the perfect world it would obviously be good to reduce as there are the risks involved with secondary Addisons.
Sorry very long reply but I find it comforting to know that for some people GCA can have a long term impact & the side effects of steroids vary massively in how your body reacts to it.
So good luck.
Don’t worry about spelling [we know what you mean] and just use TCZ if you need….
My adrenals stuttered and faffed about all the time I was reducing from 6mg down to 3mg [very slow, took about 8-9 months] so there is hope yet for you. But it does get very frustrating..
You can always try my ultra long taper …and 0.5mg [if not already] - and even 0.25mg as some seem to do [if you have the patience and ability to cut 1mg tablet into 4 pieces!].
But I think the thing is not to put pressure on yourself to reduce, and certainly leave it until we are into better weather…
Adrenal glands 'faffing about' is such a good expression! Just exactly what it feels like. 🤣🤣..there has to be humour in our journey...
Humour -an absolute must!
She-So you have made my day! Our experience sounds very similar except I don't travel and I am a widow. But if I can't continue with TCZ or get off Pred 5mg for the foreseeable would be my choice tapering very very slowly without being pressured. I just want to live a little. Just to add my MIL was looked after by a Dr Kerwin at Bristol many many years ago, she had PMR needless to say I never understood her begging not to have her steroids reduced and I owe her a big apology.
Hi. Just a little to add to the mix. I have large vessel variety of GCA. PMR 6 years this year so on Pred nearly six years but developed GCA in 2020. Finished year of Tox early last year and came off pred totally after Tox finished and flared a month later. High dose again. When down under 10mg flared again in November last year (CRP 111etc). Stopped MTX started Mycophenolate. Just a different steroid sparing agent. Down to 9mg now so see how it goes. Might be worth trying a different agent to help reduce Pred. Probably about finding what suits you as an individual. All the best
That drug was mentioned to me when I was persuaded to try Leflunomide. When I asked why the Lef was preferred I was told Mycophenolate wasn't proven for GCA. I have since read that it shouldn't be prescribed for people like me who have GI issues. Good Luck to you, I hope it proves to be "the one" that helps you.
"I was told Mycophenolate wasn't proven for GCA."
That's rich - neither are MTX or LEF!!!
She did have the grace to say its you that is going to suffer the side effects not me!
I have GCA and had it for over ten years now. I have tried without success to get off it three times. I am currently on 3mg.
That is a very long time but 3mg is a very low dose and I would be more than happy to accept staying on that without any other drugs added. All the best
Yes my consultant suggested the 3gm after the third relapse. I have wondered if I could get it down a bit. I seem to be OK but try to be on the least drugs possible, but after three relapses it does look like I need some predisolone. All the best to you too.
Prof Dasgupta says he often keeps patients at 2-3mg longer term to reduce the rate of relapse
I must admit I have thought about trying to get down to 2mg. It's trying to get the right balance.
"Hold my beer" Prednisone for 12 years. Every time Dr. and I tried to reduce dose I flared, SED rate shot way up. I started Actemra two years ago. I have been on 5mg. per day for a couple of years. I see rheumy next Friday. Our plan is start prednisone taper, finally. I have some osteoporosis but can not and will not take a bisphosphonate. I have MGUS, a blood condition that stems from bone marrow so is a bad ideal for me. I have developed severe hypertension. (180/110). Just learned I have severe sleep apnea, stop breathing 54 times an hour, O2 drops to 72%. Cardiologist nurse told me now is the time to try to get off prednisone. Prednisone not good for blood pressure. Have a kidney ultrasound next Thursday. Cardiologist plans to do further blood work. But is looking like sleep apnea may be cause of high BP, along with prednisone. I do not have moon face, dowager's hump or any other side-effect of prednisone. The cardiologist suspects kidney issues, and possibly a tumor on my adrenal gland. What, or how prednisone has contributed to this issue is unknown at this time. I have been begging rheumy to get off prednisone for two years now, but he hesitates. He does not want a major flare with a return to high dose prednisone.
Sorry you have so much going on, I hope a solution is found for you and wish you all the best with what ever next week brings.
I am currently on 2mg pred with weekly TCZ. Diagnosed 18 months ago. I plan to continue at this level for awhile, as I have had no recent flares or other issues.
Hope it continues for you and wish you well.
I am taking 5mg of Prednisolone at the moment for GCA and feel OK on this .I will see the rheumatologist early Feb bbefore reducing further. I did not get on too well with omeprazole or lansoprazole and now take.famotidine instead . I amnot taking anything else.apart from.a.statin.I am wondering how it will be once I go below 5mg will follow advice given. I am not sure if any tests.are done once you reduce below.5 mg .
All I can tell you is I feel just as well on 3mg as I did on 5 but I am on TCZ as well for a little while longer. Lots of lovely people on the forum to offer you guidance if you need it.
I am currently alternating days of 1 the 2 mg with weekly humira. Trialed many alternatives to decrease preg over the last 4 yrs unsuccessfully.
Hope it works for you
I have a friend and a customer who both had GCA both don't take pred now. I am keeping my fingers crossed for myself after nearly three years.
Good Luck Kashmiri1 hopefully we will both achieve that at some time in the future. Strangely I have never met anyone else who has had GCA and most people have never even heard of it.
Thank you HappyDiamondsl am currently at 7mg after starting at 60mg in2020. Not doing to badly at the moment. I am taking Methotrexate as well , which l think has helped. Just have to remember l have an autoimmune illness when things are goods. Good luck to you with the rocky road of an autoimmune illness🐒🤗
I have been on 2.5 dosage of pred for some weeks now. I too am wondering if I will ever not need it. As I have got a bad back and just had a cataract op I am not taking any risks till cured in other areas!
beethovenite
I think that's a very good idea, good luck
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