I want/need to know:
If anyone has gone through a year - to a year and a half - perhaps two years of Steroid treatment for GCA and now living comfortably,with little to no medication.
Please share light at the end of tunnel.
There seems to be so much uncertainty in the treatment and prognosis of GCA patients. Need some good news!
I only know 2 and neither of them were under 2 and a half years and they were under 60.
5 years for me.
So is everyone taking prednisone only? Or are you using actemra or methotrexate...as steroid sparers? I'm sorry curious because the specialist is saying if I can't get the steroids down successfully, we should look at actemra. Biologics frighten me! I'll look at it: but I won't take it. I've got latent TB and feel quite resistant to the idea of actemra since it can activate TB.
In the UK Actemra/tocilizumab is only available in very strictly delineated cases of difficult GCA. It isn't approved for PMR.
I have been in contact with a former TB sufferer (my husband) so my rheumy has warned me that if we were to go the Actemra route it would mean 8 months of concurrent anti-TB medication. I already have a whole shedload of medication because of atrial fibrillation - do I really want more? I do fine on pred even if I can't reduce the dose for long.
Actemra only works for about half to get them off pred, many of the rest manage with a lower dose of pred - for some it doesn;t work at all. It has considerable potential side effects.
Methotrexate is a disputed medication - it has considerable potential side effects - I've tried it, thanks but no thanks. I am not prepared to feel worse than I did with untreated PMR just to see if I can get to a slightly lower dose of pred.
Um wish i could say I was one - two and a half years now and still on 16 mg after a 2nd flare starting a couple of months ago - my lowest dose was then 11.5mg. Wishful for an 'early' remission for the GCA but hasn't happened to me yet !!
Best wishes
Rimmy
The diagnosis may not always be spot on, but the treatment and the prognosis is correct - apart from the unrealistic view that GCA lasts only 2 years.
Me - 5.5 years. Been in remission and off medication - 2.5 years
There is light at the end of the tunnel - it’s just that the tunnel is longer than most if us would like!
hi it was 3 years and 3 months for me. Started on 60mg Jan 2015 for GCA finished March 2018 using dead slow nearly stopped (DSNS) method. I have been extremely lucky as usually this can take anywhere up to 5plus years, so don't worry about how long it takes (I thought I was going to be off the pred and fighting fit within the first year) soon learnt that lesson. Everyone is different but there is light at the end of the tunnel and us out here who are doing well today.
One lady with GCA on another forum was off pred for GCA in just under 2 years although it had taken a few months to get a diagnosis - but 4 years later she was diagnosed with PMR!
Other than that, like jinasc in over 10 years on 3 different forums for PMR and GCA I don't know of anyone who needed less than 3 years to get off pred. But I do know quite a few who DID get off pred.
Hi,
Sorry, I’m rather late in responding. I was diagnosed with GCA in December 2015 and managed to taper prednisolone from a starting dose of 60mg per day to zero over twenty months. After five and half months without prednisolone, it was confirmed that I had PMR. This time I was started on prednisolone at 15mg per day and now, more than a year later, I am down to 2 mg per day. Although I am generally well I have developed some stiffness and muscle pains, which my rheumatologist told me was unlikely to be PMR but corticosteroid side effects. A recent ultrasound scan of the temporal arteries was negative for GCA, which I found reassuring.
With a diagnosis of GCA, I think you have to be prepared that it can take longer to reach remission than some doctors tell you, but there is light at the end of the tunnel.
All the best.
Um - WHY is it unlikely to be PMR? Even 1mg may be enough to keep PMR inflammation under control.
Following an appointment in February, the rheumatologist said in a letter to my GP that I had a normal acute phase (last tests done in November), so I guess this is one reason for saying PMR was unlikely. However, it is my understanding that a normal acute phase doesn’t rule out PMR. I’ve been there before. I think I could still have a bit of PMR. It is difficult to know what’s what, and whether my symptoms can be attributed to PMR or the side effects of a relatively high cumulative dose of prednisolone. I shall wait to see how things work out. I am currently reducing prednisolone by 0.5mg every five weeks. The rheumatologists I have seen seem keen to get me off prednisolone completely. I think they aim to taper the dosage more rapidly with patients who have PMR following GCA compared to PMR patients who have not had GCA, to reduce the cumulative dose.
Do I understand that you had had blood tests done in November and not February? That is plenty of time for a change.
But even 1mg may be plenty to keep the inflammation under control - and in some people even a low dose of pred prevents the acute phase markers developing even though previously they had shown a raised level. It isn't uncommon for patients to stop 1mg because the rheumy reckoned the PMR was burned out and within a few months the drip drip of a tiny bit of daily left-over inflammation led to a return of symptoms. I'd be more inclined to wonder if 2.5mg is plenty for you, 2mg isn't - not blame it on the pred. They are far too keen on blaming pred if you ask me!
Thanks for the advice PMRpro.
I started on 40 mg Pred, at age 72, just 2 years ago. I briefly took 60 mg after a positive TAB. With an understanding Rheumie and local Support Group, I have very slowly tapered (by 0.5mg below 10 mg) and now take 4.5 mg. I feel well, maybe a bit tired or even lazy, but do not feel ill. Perhaps I am lucky so far?
Do not despair. Things will improve.
Thanks for your advice x- tine. I started on 50mg in February and now down to 35mg. I am finding it all very hard. Got shingles within 2 weeks of the prem and now told l am borderline diabetic. I get lots of side effects like sweating mood swings and fatigue. I am going down to 30mg in 2 weeks and hope l get some improvement.
I want to be off presnosone as soon as possible. It scares the hell out of me. I know it's must for GCA but it scares the hell out of me.
Perhaps because I did not have bad side effects, I regard Pred as a friend. Taking it is better than the alternative. I am not desperate to come off it - if I need it, I will take it, forever if necessary. By eating a low carb diet, (cutting down on anything sweet, pasta, potatoes, rice & bread) I have lost weight and feel a bit fitter. Note that I am cutting down on things, not cutting right out. I start the day well with a small bowl of porridge flavoured with cinnamon and fruit. This sort of regime may help you stave off diabetes.
I do hope your side effects diminish in time. Don't be scared. Pred really is helping you
Best wishes
Christine
Thanks again Christine,you are lucky not to have many side effects. Maybe as l go down on my dose l will feel better. The trouble is l love bread pasta potatoes and rice. Not a big salad or veg person so will be difficult. Just a long slow ride l think.
I will try to be positive
Jill.
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