I wrote a couple of weeks ago how I had stopped taking steroids in June and thought that GCA had gone for good after four long years, only to start having symptoms again. The consultant rheumatologist has confirmed that my GCA is active. I have had to start taking steroids all over again and was given a new tapering schedule starting at 60 mg and now have to take 40 mg for a month.
The euphoria of all my symptoms disappearing after taking steroids has disappeared and I`m left in despair thinking of having to take steroids for perhaps another four years at least. What makes it so much worse is that I have just lost my husband so now have to face this alone. Has anyone any positive advice to help me pull myself together and perk up and just get on with living?
Edith
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Jampad
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Jam, make a list of things that give you even momentary joy and pursue them. I trade gratitudes with a friend who suffered homelessness and growing up with alcoholism. We march on despite grievous loss, illness and disappointments. The good news is that pred DOES work on the inflammation and there is a way forward with much loving support here. As I type this, am thinking about having a slight bit of scotch on the rocks.
The extreme stress of the loss of your husband may have triggered this set back. It may not last for 4 years, you have recognised it and started treatment promptly. I hope you get it under control quickly. The chances are it might be a flare and it hadn’t completely finished with you. I am approaching my 5 th year I think. Tell us more about your Rheumatologist’s treatment protocol? A non prescriptive tapering programme always suited me best guided by FAQs on this site.
I have no magic words of comfort, in my experience of bereavement it was not all bad, some of it was quite comforting, vivid dreams of my love ones with some resolution of issues. It has to be got through like so much in life. I am so sorry that you are facing this. This forum will help you with GCA as much as we can.
Thanks, Jane. The GP gave me 60mg and contacted my rheumatologist who put me down to 40mg after a week. My rheumatologist is great. The first time I saw her she told me that tapering steroids would be a joint effort and we would work it out together. She was quite happy for me to use the slow methods I read about in this group.
I don't really have any words of wisdom, but would like to say that I am sorry for your loss and that you are also having to deal with a set back in your health. I wouldn't be at all surprised if they are linked. All I can think is that you don't know that you will be ill for another 4 years or how long it will last, since these autoimmune conditions are so unpredictable. Though your dismay at being ill again is a completely natural reaction and I am not surprised that you feel fed up. But if you allow yourself to dwell on that aspect, it will most likely drag you down and add to your feeling of overwhelm. For the time being, are you able to focus on your immediate needs instead, what help you need and how you can best care for yourself to get well again? It really is a case of baby steps at this stage. I hope you start to feel a bit better soon.
My condolences on losing your husband….and sorry to hear your GCA has returned.
I do wonder whether such a high starting dose was required though, did you have sight disturbance? But at least your Rheumy is not taking any chances, so disappointing though it may be for you, he is taking your situation seriously which is good on his part.
Hopefully you will be able to taper relatively easily this time around, but obviously your health is paramount .. so you’ll have to see. Looking at previous posts you did seem- to suffer from a few flares last time so maybe your Rheumy may consider prescribing Acemtra /Tocilizumab this time.
Sorry to hear about your situation and condolences on the loss of your husband. A number of us here with GCA are in a not dissimilar situation. Have you any activities in your local community that you could join? The local Church here has a bereavement group that meets once a month. It is quite popular and everyone is welcome whatever their religion or none. They also have the facility whereby if anyone wants a one to one they can have that too. As I understand it they are all trained in councelling and regularly go on refreshment courses.
Thanks for the reply. I`m lucky to have good family and friends to talk to. I have joined a local online group for widows. They meet up regularly but I`m not sure if that would be good for me. If anyone mentions my husband or anything about him I just cry.
Of course you do, it's still very raw.. would be unusual if you didn't cry. I'm sure they would fully understand.. as do those of us that have been in same situation. I lost my husband during my GCA years.. and it takes a lot longer to get through bereavement than many think.
My GCA-LVV / PMR resurfaced 6 months after reaching zero pred. I had had Tocilizumab which must have helped control the inflammation and certainly made me feel very well. My Rheumy put me back on pred, but at 5mg for 5months - so a lower dose for longer, then a slow taper to where I am now at 1.5mg a year on. I felt disappointment that the conditions had not gone into full remission, but not your "despair". I am sure your emotions are heightened by the loss of your husband for which I send you my sympathy.
Ask your GP to check your bloods every couple of months to monitor the inflammation - that is, if your CRP & ESR are good indicators. I find it a boost to see the levels falling, but if they rise, we can act quickly.
NB Tocilizumab is 'rationed' by the NHS for GCA, to 52 weeks' treatment.
I'm so sorry to hear you lost your husband - and that your GCA hadn't gone away. The timescale of the return of symptoms suggests to me that it wasn't in remission - but that the underlying autoimmune disorder that causes the inflammation is at a very low level. Even a very low dose of pred can be enough to keep that inflammation from building up to a level that you can feel in the form of symptoms but when you get to zero pred that inflammation is able to build up again, like a dripping tap will eventually fill a bucket and even overflow unless some of the water is scooped out at intervals. Had you remained on 1mg pred this might never have happened - and Prof Dasgupta told us he does sometimes keep people on a low dose as it prevents such relapses. But it is what it is - and you may get to under 10mg pred very quickly. And it sounds as if you have a really good and kind doctor.
It all feels much worse because of the confluence of the relapse and your bereavement. There is nothing wrong with you feeling emotional when you talk about your husband and maybe it is what you need - although it is something many who haven't been through it don't get. And we are all different - it is 2 years since my husband died and some things are harder now than they were then. The way you feel changes with time - but it never goes away entirely, just you learn to deal with it better, An online group sounds ideal - you can participate as much as you are able but can "hide" if you are in tears and feel you need to simply by switching off your video if it is a zoom meeting.
As I said before - we are here, several of us have been where you are. You will get through it however hard it feels at present,
Edith, so sorry to hear that your husband has passed on. The love that you feel for him is the enduring connection between you.
I am wondering whether GCA that went under the radar for many months on low then no pred and then made itself known is more like a flare than a full blown episode. In which case could it not be treated by starting at 20 and a reasonably swift taper to 10, with bloods monitored regularly. I have no knowledge of this or evidence so I could be getting it completely wrong, but it is something I would want to be asking my rheumy.
Hi Viveka, I had been hoping that this was a minor flare up which could be treated by low dose steroids. I had an appointment to see the rheumatologist which was cancelled at the last minute as the roads here were impassable because of heavy snow. So, she rang me instead and I was surprised so didn`t get to ask all had planned. I`m waiting for her letter with a new tapering plan.
Hi Edith, had a look at your profile and I think jaw claudication is probably a significant flare, but does it need to go all the way back to starting dose as if it was a new illness? So seeing as rheumy has taken that route, you may want to ask them if they think it would be appropriate to taper more quickly than usual until you get to an effective lowest dose.
I do empathise with your situation - it is terribly disheartening to have done so well and for it to rear up again. I was nearly off the pred for GCA this time last year when PMR started out of nowhere - and in effect it's taken a year to reduce to one mg below last Dec. X
I feel very sorry for you all the effort of reducing. You must feel fed up with it. I saw my rheumatologist last Thursday all upbeat as things felt ok only to be good my bloods show increased markers. I was very aggrieved by it all.
Thank you PMpro, I hadnt thought about that one. I currently have a docs not saying to phone them as a sputum test shows a big overgrowth of yeasts. Maybe that?
Not sure about that one. I am having a call from the surgery about coughing up bits of yellow stuff infrequently but more than usual they say it's worse in my mouth than the lungs. A year ago some chest person mentioned apergillus . But wasn't sure as it wasn't bad at all.
Dear Jampad, I 'm so sorry you are having such a hard time.
In case it helps, I also came off steroids for a few months in March, with the help of TCZ, and had to start again after 5 months. However, to be honest, I was quite relieved to get them back. Life gradually became a lot more comfortable again. I really hope you might be able to get down to a moderate dose much more quickly this time. Lying awake at night is the last thing you need right now.💐
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