I hope someone can help me, as I feel like I've been thrown to the wolves and I don't know what to do.
I am having a major flare up of PMR and GCA, I have blurred vision and head pains every day for the past 2 weeks but have been feeling awful since February. My body is so sore, plus Iam so tired all of the time, I just feel fed up. When I spoke with my doctor last month he just wanted to put me on more drugs - not the way I want to do this. Anti-depressants he says - what?? Methortrexate to get me off prednisone, I said no to that because if I do have a flare up I need to increase the prednisone again, then I'll have another drug to deal with. I was down to 20 mg for quite some time (the lowest I've been at is 4 mg) but increased it when the flare started in February - I went up to 60 mg for a few days, reduced by 5 mg for a few days, then symptoms came back worse so a few days ago I went up to 90 mg. I know this is extrememly high but when I was first diagnosed in 2011 and the head pains were unreal, that is the dosage the doctor put me on for a short time until it was under control. The scary part of this is that I've been on 90 mg for 3 days now and I am still getting head pains and pressure in my head at night and my doctor is away until March 30th. Maybe it is just stressed related, I don't know but I would truly appreciate any words of wisdom.
Thank you!!
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Sally001
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oh dear that does sound a nightmare, but if 90mg is not helping the headaches, then I would be thinking it might be something else other than GCA..or a combination of things.
Usual recommendation for a flare is to stay on the increased dose for up to 14 days, so I doubt the 60mg was given time enough…..but you really shouldn’t be trying 90mg without medical input….and honestly you need medial advice NOW - whether that be ER or a walk-in clinic……
Dear Sally — one more thing— i agree with the concerns and thoughts shared about 90 mg of prednisone— in particular that you are losing a lot of calcium in your bones at that very high prednisone level. I also agree that medical advice NOW is really important!!
Varying your dose like that is not a good idea. If steroids are not helping at 90mg something should be questioned. Does your doctor know you are yo yoing up and down like that? It sounds like they are trying to help. What are you hoping they will do for you?
Yes, my GP suggested that I increase the prednisone when I have a flare up as I don't have an optho/neurologist anymore; but have an appt with an opthamologist on May 2nd. My GP asked what dose the optho/neurologist had put me on when I had flare ups before and suggested I go back and do the same. I must say that I don't have the head pains today and am hoping that they won't come back.
I agree with DL - I think you need decent medical advice over this. At 90mg - which is a very hefty oral dose - you should have NO PMR effects, Just a few days of 60mg was almost certainly not long enough to get GCA under control but if 90mg isn't a dramatic improvement it must raise questions as to whether this is GCA and there are other things that can cause similar symptoms. And pred itself can lead to headaches.
Thank you PMRpro. I know I should have no PMR effects, that is what scares me but will take your and DL's advice and will call our medical line and speak with a doctor about this. Yes, I guess I didn't give 60 mg enough time to work, I just panicked. I also didn't realize that prednisone can lead to headaches as well. How do I taper and when should I start to taper from the 90 mg I am on? Do I go down dramatically or 5 to 10 mg at a time until I reach 20 mg again? I appreciate your help.
Dear Sally, I really hope you've mnaged to speak to a doctor by now. As regards other medication, after 12 years of GCA, has no-one mentioned the possibility of Actemra?
I have had GCA for 5 years and you shpuld never be going up to 90mg. I wonder if these headaches are migraines. You should insist on being under a rheumatologist as this is the professional for GCA. You can then usually get help by emailing rheumatologist although it can take time. In your case i would go to A and E. Good luck
so sorry to hear what you are going through Sally!!! My first question is what to your blood tests say, ESR and CRP—that will give you more information about how to interpret your symptoms— prednisone itself can give headaches as a side effect. This support group is wise and knowledgeable—in the meantime keep the faith—
Thank you all for your advice, I really appreciate it. I spoke with a GP yesterday and he told me to go down to 60mg for 14 day and then speak with my GP when he returns on the 30th of March. I lowered my pred to 60 mg today. My head pains (pressure in my head) is still there and I am sore all over and my feet are swollen and have been for some time. Also, my eyes get blurry then they are okay, I just don't know what is going on or why these things are happening, I am just a mess lately. I do need to get blood work done but again have to wait until my GP comes back from vacation. Thank you again everyone for your help.
Blurriness can be caused by the Pred..and why can’t the GP you spoke to arrange blood tests instead of having to wait until yours comes back off holiday? ..and really the headaches need investigating NOW, not in two weeks time.
As suggested previously, ER or walk-in clinic -or is that where advice came from?
I will contact another GP tomorrow and have them send me a req so I can check my CRP level. We have a system where we can call upon a doctor through a website when ours isn't available and they will call back and speak with you. I am concerned about the head pains for sure, especially at this high dose, I shouldn't be feeling like this and I will get it checked out. Sharitone asked why no one has mentioned Actemra?, What is it and what does it do? Thank you.
Yes please do get it checked. Have attached link re Actemra - it’s is used for a variety of illness, RA predominantly [certainly in UK]. but also for GCA. Here, and I’m guessing Canada as well it needs to be prescribed by a consultant - and not sure how easily it is funded by your health service…but it’s worth checking out.
It is used in conjunction with steroids, and although some get good results with it, it doesn’t work for everyone.
Just reading the side effects of Actemra (can cause TB or death) makes me not want to use it. I have enougjh to deal with without adding more symptoms, which is a reason I did not use methotrexate. i just want off all the drugs...maybe one day I hope. I will contact a GP today and get a requisition for blood work and go from there. Thank you DL and PMRpro.
It doesn't CAUSE TB, if you have been exposed to TB in the past it may cause it to reactivate so you are tested before starting it. You might be surprised to find out how many drugs have death listed - including paracetamol and aspirin!
I have no side effects of Actemra - but the PIL must list all the possible effects seen during trials and use that can't be definitively ruled to not be the drug, Doesn't mean it will happen to you.
Dear Sally, please find a way to do your blood tests now, ESR and CRP. Is there a walk in clinic in which you could get your labs done to determine your level of inflammation. As mentioned here both blurry eyes and headaches could be caused by prednisone. The pain in your body could be a PMR flare and for which you would a much love dosis of prednisone. All the best.
Thank you Chiqui1950. I will be in touch with a GP on Monday to get a requisition for blood work so I can see where I am at and then go from there. I don't know what caused this flare but it has to be the worst one I've had in 12 years.
you've had really good advice. Let me add that as one suffering both the journey can be rocky with serious ups and downs. Try to ride each without overreacting and you won't spend so much time trying to get back in shape. I don't have any answers and have learnt that you just have to accept what they decide to bring. We all wish to be off the drug but please don't rush it and try to learn how to minimise side effects as it is the only thing between you and crippling pain. There might be something else at work and you might just be suffering conflicting symptoms from both so get as much test results to help determine which and try to work out the why's. good luck on this journey.
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GCA or not ……..
GCA?
GCA or not
GCA or not?
