I'm a 60 year old woman who is dealing with temporal arteritis for the second time. This time it has been two years now and I'm losing my mind. The first time I had it I was 57 years old and it lasted 10 months. I was on prednisone for 1 year and it went away for almost a year. Then all of a sudden, it came back with a vengence. It's bee two years now and it is making me to damn tired and sick. I'm having a hard time dealing with it now. Every time I reduce my prednisone dose to close to 10 mg, it comes back full force and I go back to 60 mg again. I started weekly Actemra injections and they seem to be helping, but they give me such sores in my mouth, toungue, and throat. They also destroy my stomach and intestines.
I'm at my whit's end now. My insides are shaking on 40 mg prednisone and I will reduce to 35 tomorrow. Any ideas how to better deal with this horrible desease? I have to say that I started taking Gralise a few months ago (once a day gabapentin) and that has improved my life greatly. No more jolting pains in my head and I'm able to sleep all night.
I've put on so much weight from the 2 years of prednisone and I'm so tired of feeling so old and weak.
Any ideas or help?
Written by
lcove
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I am so very sorry.... how totally unfair. If you've had it once, you should be exempt for the rest of your life! I understand being fed up with feeling old and weak and tired.... I was not ready to deal with these emotions either! It sucks! Worse than the disease, really. I can't help you with your feelings as I am on a low myself, but the "angels" will be along soon to lift you. Hang in there.
From my experience of GCA I would say it never went away....it’s just been lying low and then decided to re-surface!
I started at 80mg having already lost sight in right eye after being undiagnosed for 18months, and yes I know the side effects of Pred can be pretty horrendous, but even the worst outweigh the possibility of complete side loss.
Maybe I was fortunate but after a slow tapering regime I did eventually get down to zero - it took 4&1/2 years. No Actemera - not authorised in UK during my journey with GCA so I can’t comment on the effects of it, but I do wonder about adding in another powerful drug!
As you keep relapsing I would say you are reducing too quickly, whether that’s your choice or your doctor’s I don’t know, but it’s obviously not working - and each time you have to increase your Pred it makes it’s more difficult.
If you watch your diet, and cut out refined carbs it might help with the weight problem.
I know you are in a bad place at the moment, but you need to take control of your illness rather than the other way round. I would ditch the Actemera, get your symptoms under control with a decent level of Pred, and then reduce slowly!
This (your) is the advice I would be taking if I was in lcove's situation - I have become a DorsetLady acolyte as her/your advice always seems so practical and intelligent and has come from 'hard won' experience. For this reason I have really slowed down my tapering and so far so good - it is always so tempting to think we speed up the duration of the illness with a faster taper - but this is unfortunately counter productive and is mostly not the case !!!
Many of us longtimers on here have worked out (not rocket science) -that a hasty reduction very often doesn’t work. And very often patients end up taking more Pred rather than the less the doctor’s are trying to achieve with a faster taper!
I know some patients get through without too much problem, but even the powers to be are now realising that the illnesses stay active much longer than previously thought - so while it is active, you need the Pred.
My GP wanted me to reduce faster. I phoned my rheumatologist who told me I must stick to what he has prescribed. So far all seems to be going fine. I am down to 4 a day for a month and then reduced again for what I hope will be my final month
So sorry you are struggling so. I have had active GCA for almost 3 years, flared on and off, struggled at 25mgs, then 20 and so on, really struggled at 10mgs but now down to 7mgs, I have been on that for 3 months my rheumy wanting me to stabalilse a bit more before dropping again.
Weight, itsa struggle on high pred dose, always hungry and we do not appear to metabolise carbs the same way. I Put on just over 2 stone, and it has taken me a year, but have now lost 2stn 4lbs - I used Slimming World, I needed the discipline of being weighed etc., but I could not follow it exactly, no rice, pasta and limited potato - once a week maybe. I mostly lost half lb a week, so slow loss but feel so much better. I am 59 and I felt 10 years older when I carried that extra couple of stone.
I am not sure I could do it when I was on 30/40mg preds, it just made me feel so dreadful - but as soon has you feel a little more yourself, set yourself a target and go for it.
Oh I so feel for you having this horrible disease rear it’s ugly head a second time. I suspect that it never really went and you have been putting up with a lot of PMR symptoms in the interim. You must feel absolutely distraught,I know I would. You are going to have to do a careful slow taper this time. I am not sure if I would persist with Actemra if it is just adding to the misery. Can the doctors do anything about those ghastly side effects? I know so little about Actemra. It would really have to pay its passage for me. I know where I am with Pred but haven’t had to endure your doses.
What do Gralise and Gabapentin do for you?
A good nights sleep is a blessing. Have you tried a very low carb diet? Those who manage it don’t seem to pile on the steroid weight in the same way.
I know the “ old and weak” feeling well. Today everything has got on top of you. I hope tomorrow gives you the strength to feel more upbeat about your recovery to come.
hi Icove so sorry to read of the terrible bad time your having but can only advise you to listen to D/L. As a GCA sufferer myself I always did along with all the other good advice on this great forum.Hope your feeling better soon.
You need to find a doctor with a more realistic approach - you are probably reducing too far and too fast and that is what is leading to the flares. It is also quite likely you don't need to return to 60mg every time. If you are on Actemra there isn't much else to try. But you may be able to help the weight gain by cutting carbs drastically - it does work.
Poor you, so unfair getting it twice. I was diagnosed in Feb (great Valentine's present) and was given a sheet of paper with comprehensive instructions on when and how much to reduce the pre. It lasts for 2 years. I started on 55 and I am now on 30, reducing to 25 next time. It goes down every 4 weeks. As for old and feeble, well I think I am tooooo optimistic. Last week was the first week in 7 I felt a bit better but now after doing too much at the weekend I have gone downhill again. ( I am just a silly s--) Well I have learnt a lesson.(maybe) I do hope you get on a good path soon as it is really miserable as you don't know until afterwards.
p.s. I have a very sore mouth and tongue without the Acterma.
GCA lasts as long as it lasts - and for a few people it lasts a couple of years. But it can last much longer - several people on the forum have had it for 5 years or so. So if it doesn't go in 2 years - it isn't anything you have done or not done.
Thanks for the reply. I'm so frustrated. I hope yours get better quickly. The prednisone tapering makes me crazy. I've gone up and down so many times now. I've been as low as 5 mg for a month or so and then back up to 60 when it starts all over again. Good luck to you.
You generally do not need to go back to the beginning and 60mg if you flare at 5mg - 20mg would more than likely be more than enough. However - if you flare at a similar level every time use that as your guide as to where to stop reducing the next time. You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. You can't force the reduction - it just leads to flares.
There are some flare ups that only need 20mg for a few weeks, but the last time, my inflamation was very high and the pain in my head and scalp were unbearable and I needed 60 mg to calm it down enough. Now I'm on 35 mg and this tapering will take longer than I tought. Thanks.
Then you very probably should be left at the high doses for longer before reducing - we do see that a lot with people whose doctors try to rush them off pred.
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