I woke up on August 5, this year, and was blind in my left eye. I was diangosed that day with GCA. The previous week I had gone to the Doctor but was diagnosed with a sinus infection. It is a tough one...right now I am just beginning to taper (and am pretty nervous) fro 64 mg of methylprednisolone PLUS a weekly injection of Actemra. It is now December 13 and I am still symptomatic. Initially I was on 120 mg of Prednisone a day, hospitalized once and received 1000 mg for three days....and it just won't stop hurting. The one time we tried a taper, I think a few months ago, I lost some of the vision in my right eye when we hit 40 mg. My rheumatologist is great and I've had consults with Portland, Maine and Boston. Anyone else have this history? I live alone and am still fighting to stay independent. How was it with you? How goes it? Like many I'd never heard of GCA and now it owns me~!
Any info or help appreciated~! Methylpred and Act... - PMRGCAuk
Any info or help appreciated~! Methylpred and Actemra
Hi welcome to the forum. Sorry to hear of your sight loss. Gca is a horrible disease. Our resident expert Dorsetlady will probably be asleep now but she will pick up your post in the morning here in the uk. She has loads of advice and links and advice on tapering. She also lost the sight in one eye due to misdiagnosis although over a longer period than your own.
I have pmr so cant give you too much info about gca myself but you will get others with gca replying tomorrow. Please feel free to ask any questions you have. There is usually one of us about even allowing for different time zones. Take care. YBB
Thank you so much for responding....sometimes I get pretty down and I know it is the UNKNOWN which is scaring me...I am going to see my grandchildren on the 27th and really didn't want to start this taper until I had seen them...but the Dr. said...no dice...it has been five months of such high doses....I'm afraid of losing the other eye. So kind of you. Have a good night
We wouldnt usually reccomend tapering over stressful periods like christmas but this is sonething only you can decide. My personal view would be, what difference would a couple of weeks make staying on present dose. Your tapering is likely to be more successful if you are not stressed. Dorsetlady will have more details on her own taper.
Dont ever feel alone with this as we are always about, even if all you want to do is say how you are feeling. Its a scary time. I have pred induced insomnia which means i am about until the early hours. There are others online at this time because they are in the usa or Canada. Never feel alone. YBB
Thanks...I'm so glad I 'happened' upon this page. My thought process was the same as yours...why a big deal but he was quite firm. 'Nite
The doctor saying no dice ... .... Is this the same one who sent you away with a sinus infection or was he/ she influential in getting you to reduce to 40mgs when you lost some sight in your right eye? If so no wonder you are anxious.
I do not have GCA but can empathise with your anxiety. I suspect you don't know whose judgement to trust. Would it be worth seeking a second opinion or would this further muddy the waters for you?
Others will be along with experience of GCA soon. Meanwhile hang on in there.
From Marilyn to Marilyn...thanks. Sinus dx was one doctor. My rheumatologist and I did consult with Portland, Maine and Dr. Stone who wrote the did the study and wrote the New England Medical Journal article that led to the approval of Actemra in the US for usage in the treatment of GCA.....so I feel it is a well founded recommendation although it is not what I want to hear for sure. Anyone out there used Actemra for GCA? I've been injecting for about 8 weeks I think...I question my memory...'Nite
Others who are using or have used will no doubt be along later. YBB
I can’t help as I have PMR but not GCA but I still want to send my best wishes.
Hi Grammy80,
Welcome, so glad you found us. As YBB states my case was similar to yours in that I was misdiagnosed initially - until the loss of my right eye.
My treatment was different - oral Prednisolone all the way through- this is first 8 months or so - (initial high dose to protect other eye- and taking account that first 6 months can be problematic)-
80mg - 2 weeks
60mg - 8 weeks
55mg - 2 weeks
50mg - 3 weeks
40mg - 2 weeks
30mg - 3 weeks
25mg - 4 weeks
20mg - 5 weeks
17.5mg - 4 weeks
15mg - 6 weeks (Xmas period).
I never took Actemra, at that time is was not licenced in UK for use in GCA so sorry can’t comment on that.
In all it took me over 4 years to get to zero and I’ve been in remission now for 3 years.
You do feel initially that GCA ‘owns’ you, but as you get things under better control, you’ll find it doesn’t.
The hurting may be your brain adjusting to mono-sightenedness, but it might also be your GCA, so just be aware and obviously don’t reduce until you are sure what it is.
These are posts I wrote a couple of years ago, hoping to explain the result of mono sight and that there is life after GCA, I hope they do give you some assurance that life does go on, but that the doctors do need to listen to you, not just the other way around.
Welcome - and I am so very sorry to hear your story.
Actemra is not a 100% certain "cure" for GCA I fear. For about half of patients it works well and they get off pred. For about half they get to a lower dose and for a few it doesn't work. More cytokines than just IL-6 are involved in GCA, it is described as heterogenous, and Actemra is specific to IL-6, other substances are not targeted. The biologics are very specific on their action.
The other possibility is that methyl pred doesn't work for you - it didn't work for me, just caused a raft of adverse effects. I had been doing really well on prednisolone but had moved country - here in Italy they do not use prednisolone so it isn't approved for reimbursement/available. That meant using methyl prednisolone and the dose I required increased steadily over a period of about 5 months (together with weight gain, developing a black beard and other joys!) - finally up to 20mg taken at night in the hope of having any relief from PMR symptoms before mid-afternoon and that was minimal. When I was switched to prednisone in the form of Lodotra/Rayos I went from 20 to 15mg overnight and had no trouble getting down to 10mg quite quickly.
And really - another 2 weeks of well o ver 40mg is not a lot in the great scheme of things. The stress of Christmas and worry about losing your sight makes high dose pred peanuts in my book I fear. After all - it is 2 weeks of slightly less you are looking at, not 2 weeks of no pred.
I hear you....and I AM in a bind....back 20 years ago I was on and off prednisone for asthma and one night when I rolled over in bed, my left femur snapped. So, I had a hip replacement and in 2017 had to have a revision. My bones were not in the best of shape and part of my femur had to be wired. Also have a 9" rod in right ankle with plates and fusion, already had one stroke at 42 plus a totally controlled seizure disorder ...controlled 100% for 43 years although the steroids have forced changes in those meds, diverticulitis and 2 stomach bleeds...and I'm leaving the surgeries out.
I'm a fighter...but this is a tough one and all of you are great. When I asked the Dr. to postpone the taper I'm sure these are some of the reasons he said no.....he held off for a while on the Actemra because of some of these issues. All of you are shedding some light on my roadway, believe me and I'm amazed at how much you all know....thx
I am so very, very sorry. I do have GCA and some PMR. But I think that my PMR is not as bad as that of some of us on here. It seems that nothing else is wrong with me. I can't give you any advice. I do know the fear of blindness. And you have REALIZED IT. You are totally blind in one eye. I have problems with my eyes. And they hit new (negative) milestones when I was tapering at various times. I personally know for sure that not all of these eye issues go away. They will be with you for the rest of your life. It is obvious that you would be very nervous about total blindness. I was very nervous for years and apparently my optic nerves "see." But I don't know anything, personally, about the bone issues that you have been suffering or about any of the other issues you described. I can't help you. I send you my very best good thoughts and for me, prayers. Nothing like this can hurt. I hope that it helps.
Thank you so much....it is a blessing to be able to talk to all of you. I'll take all the prayers I can get. Thanks for getting it~!
As a GCA sufferer , although I thankfully haven't lost my sight , I would agree with the others and I wouldn't taper in these next few weeks and would taper after New Year , unless there is another urgent medical reason which means they need you to start a taper again right now.
With your previous tapering issues , especially the loss of more sight during a taper, and current level of symptoms , I personally don't think tapering over a time of year when Doctors offices can be closed or Hospitals can be packed out with all sorts of emergencies is a good thing.
It can be much harder to get hold of your Doctor or Specialist on the exact day that problems begin to occur , or see the right Specialist at A and E if something happens over the Christmas Holiday period , so , if there are the possibilities of Tapering difficulties in your history I think that is something the Doctors should factor in.
Feeling low and anxious before you start a Taper isn't always the best foundation for its success , so maybe it would be better to begin when you have chance to see them again . arrange another appointment and really get chance to ask lots of the questions you have so you can be more positive and confident as you begin.
I haven't started Actemra yet , I am still waiting approval , but I know from reading other people's comments on Biologic Therapy it does have its own side effects to get used to , and it isn't a magic bullet , it can take time for it to help in your recovery and Steroid Reduction , especially if you have had other complications.
If you haven't got control of all the potential Non GCA head pain related to your vision , like eye strain and migraine from coping with your vision changes , it may well be better to get some medical and Self Care advice that has started to work for these things first before a new Taper .
It would help you have less to contend with and help you rest in a way that would make Tapering more successful , and you would be more able to tell if your Reduction or GCA was responsible for your symptoms rather than something else.
I haven't used your variant of Pred , but I agree with Pro , there may even be a possibility that you need to be on Prednisone , or another Pred variant , rather than MethyP and this has added to how hard it has been to Taper .
Have they ever offered you a different Pred choice , or was there a medical reason that they did not try Prednisone?
All in all , I would suggest that you contact them again by phone , tell them your thoughts based on the advice you are receiving and ask them if there is a Clinical reason that your Taper could not be started in the first week of January instead of right now , as you would feel more confident to start a Taper after you have adjusted more.
If there is no actual Medical Urgency for there choice , except that you have been on a high dose for some time and they want to get things going , I would personally politely state that I want approval to start the Taper in January instead .
Please keep us posted on what you decide and how things go , and if you have anymore questions , or just feel low and need to talk to people who understand there will always be someone here to listen xx
Hello....you are not alone with this....So sorry to hear of your sight loss. I was diagnosed end of June with GCA, very luckily before any vision problems, but like you with pain in my sinuses, over the top my head (not at the time in my temples) and a problem using my tongue, which was the trigger for my GP to suspect GCA. I had a biopsy 4 weeks after starting 60mg/day Pred and even after all that time on Pred, the pathology report came back 'severe GCA'.
I have had such high doses of Pred as you have but I could not taper from 60mg Pred a day, so had 3 x 500mg infusions of Pred to no avail....still had a certain amount of pain. I have been very lucky in that my Rheumatologist managed to get me approved here in UK (due to not able to taper and high cumulative dose of Pred) for RoActemra with Pred and advised me to taper quite fast as the cumulative dose of Pred I have received is now quite big. But have just a flare so had to go back up with the Pred to 30mg....even then the pain is still there although not all the time....but have been advised to carry on for at least 2 weeks and then try to reduce. I have been on RoActemra for 8 weeks and have been advised that it will start to have desired effect maybe within 12 weeks and then tapering will hopefully be more successful. I feel it really is a case of trial and error as not much seems to be known about the responses...everyone seems to be different.
Like you, I am anxious about starting to taper before Christmas, as I have found that if I am stressed the symptoms seem to start to return.....so will maybe start a very slow a taper over this period. Hope the Actemra will start to have effect for you in the near future and would be good to hear how long it takes to kick in and how you progress. It would be lovely to have someone to chat to who is on the same drug regime, so we can compare notes etc.
Wishing you a lovely Christmas...take care.
As you can see from my response to Grammy80 above I stayed on dose for 6 weeks over my first Christmas - that worked fine, so I continued in same vein for the following Christmases.
No matter how much you love Christmas it is stressful.. some good, some bad, but it’s all stress, and your PMR or GCA doesn’t react well. So, despite what the doctors may say, just give yourself a break - and put the tapering on hold for a few weeks.
For those of us in the northern hemisphere add in the cold winter weather as well, and it’s a double whammy.
Some enlightened Rheumies do suggest you ease up on the reducing during the winter (which makes sense, most people don’t do well in the winter whatever their illness) - but unfortunately they are in the minority.
Thanks for the winter advice....will definitely bear this in mind
Oh, you have my heart! All of you do! I also feel like nothing is certain...I don't expect a cure...I'd love a little progress or the knowledge that things won't get worse...but nothing is guaranteed. The wife of a man I used to work for was diagnosed with GCA over 11 years ago. She rode the steroid rollercoaster for many years...no sight loss, thank heaven, but she still takes 1mg per day. She said no matter how often she has tried to shed it...she can't. She is spunky beautiful feisty 85.
You all give me such a lift in not feeling alone....that is HUGE.
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