I was diagnosed with GCA four and a half years ago , am on my third relapse and am tapering (now 10mg prednisolone and weekly Actemra). At the onset I had severe headaches and a dark 'veil' over half of my left eye which went after about 5 minutes and the opthalmologist put me on 60 mg prednisolone. I also had a biopsy and GCA was confirmed.
I didn't have further eye problems until the beginning of my third relapse last November, when the veil reappeared. This time I was referred to a stroke clinic (ultrasound on carotid artery and CT brain scan proved clear) but still recommended to treat visual problems as TIAs. I am now on blood thinners and tablets for hypertension as well as lowering cholesterol. I have osteopoenia so am on calcium to reduce effects of Lansoprozole. The cocktail of drugs certainly makes me very fatigued!!
I am wondering whether anyone else has has similar experiences? I am grateful that the hospital consultants are being cautious (I'm locked in a web of rheumatologist/neurologist/opthalmologist and willing but confused (as I am!!) GP and feel I have to make the decisions myself as all claim not to be an expert. I know medicine is not an exact science and everyone is different but the overall side effects of the drugs is of concern as is the worry about what next!!
All views/ experiences welcome.
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JulietPotion
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The calcium is actually to offset potential adverse effects of pred on bone density, not the lansoprazole. The fatigue is just as likely to be due to the underlying autoimmune disorder that is causing the inflammation as it is to your medication.
Were you on the Actemra when you had the 3rd relapse? Or was it started as a result of the repeated flare?
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And how much pred? Only half of patients are able to get off pred entirely using Actemra but a lot of doctors seem oblivious of the fact. There are at least 3 different underlying mechanims for the inflammation that causes the symptoms in GCA and Actemra only works against one of them, the IL-6 mechanism. If your GCA involves the other two then you will still need pred to manage them - though less overall. It is perfectly possible it was a GCA flare, not a TIA.
Thanks, yes that was my view but my blood pressure was also high and my GP was most concerned I should be checked out in case it was a TIA. I was on 4mg pred at the time of the eye incident but shot back up to 60mg by the rheumatologist and have been reducing ever since with help from Actemra. I am now on 10mg. My GP children are concerned about how long I have to be on the steroid though are well aware of the dangers involved.
It will depend on the course of the GCA and the factor I mentioned. With Actemra you will probably get to about 10mg without problems and you MAY get lower. Even with Actemra, your reduction needs to be much slower now, 1mg per month even on Actemra is a good idea so you don't overshoot and cause a flare.
However, in the UK Actemra is only funded for one year at present although there are effforts being made to get that revised as many patients relapse once off the Actemra, which is hardly surprising. You may continue to manage at 10mg pred even without Actemra if you are lucky but GCA itself can take up to 4 or 5 years to burn out entirely and you may need some pred though the amount does tend to fall very slowly over time.
Once you are these low doses of pred, your children shouldn't be too concerned - I have been on pred for 15 years, much of it at well above 10mg though rarely above 15mg and never above 20mg, and I have no identifiable adverse effects - no diabetes, no osteoporosis, gained weight with PMR and methyl pred but lost it all having gone low carb. And have had 15 years of being able to function well which I couldn't without pred. Many doctors are unreasonably scared of using pred and it is often to the detriment of patients with PMR/GCA - used carefully and appropriately it isn't half as bad as it is painted.
I was on steroids for 4.5 years [but had GCA longer as it wasn’t diagnosed for 18 months]. Initial dose was 80mg for 2 weeks, then 60mg for another 8 weeks.. no Actemra as it hadn’t been authorised in UK for use with GCA at the time.
My GCA has been in remission since September 2016… and cannot say I have any a long term issues with the amount of Pred taken.
As PMRpro says many doctors have an irrational fear of Pred. Fortunately mine didn’t, diagnosing consultant was an Ophthamologist and as I had already lost sight in one eye was more aware of dangers of not enough Pred than many.
I was never rushed to get off it, and subsequently never had a flare along the way.
Thanks to you both. The various medications now mean I have mild neutropoenia and I don't think I can do much about that? It has been suggested that I go on to methotrexate in a few months' time, when the Actemra runs out; I don't know what people's experience of that has been?
My major worry was that the eye problems and GCA were actually unrelated and that I had/have 2 different conditions. It can be easier to just lump things together. However, as you have said, it sounds more likely that they are linked.
Rugger was switched to MTX when TCZ finished - did nothing if I remember rightly.
They are working on getting it to be available without restrictions - it is if you have RA so it does seem extremely unfair. NICE got very iffy when I said it smacked of ageism to me. Apparently they said the same to someone from the charity before it was eventually approved for GCA when they were saying no - and after HER robust objection, just a couple of months later it was approved.
Hi Juliet.. I also have GCA since April 2021 also PMR since 2015..I to had an episode of a darkness creeping down my eyes slowly like closing the slats of a venetian blind one by one..it only lasted less than a minute but occured about 3 times while getting ready for bed..I took extra Pred just in case and next morning all was fine but guidance on here suggested I go to A&E to have it checked out..long story short a ct scan showed all was fine noTia and consultant felt as it happened in both eyes together it was likely to be a migraine..this was about 18 months ago and all still ok no return of the dark curtain..
Hello Juliet, I have a similar background (GCA since August 2020, same age as you ) - only 2 flares ( one since finishing my year’s Tocilizumab /Actemra).. so now on Leflunomide, involving fortnightly blood tests to check on possible resulting liver and kidney damage from the medication. Eye deterioration again, new strong prism on new glasses to prevent diplodia. I’d got down to 2mg… now told to stay at 15mg. Like you, lots of fatigue and fairly wobbly, and whenever I’ve asked consultant if it’s the meds or the illness, the answer is invariably “it could be either”. So, onwards. PMR Pro, I was heartened to see your comment about GCA possibly burning out in 4-5 years… never heard that before. After the completely misleading “ 2 year” projection when one is first diagnosed, no one offers an opinion thereafter. Except I know someone in her 13th year of GCA, I believe. Good luck, Juliet
Mostly when GCA lasts longer it is because PMR is also involved. DorsetLady was on pred for about 4 or 5 years - lots of others on the forum over the years about that sort of duration.
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