Hello, I'm thrilled to have found this site. After a year of steroids, hospital visits, anxiety and fear , I am not the person I used to be. Though I have lost the moon face, I still carry 25 extra pounds, have osteopenia, fatigue and mild to moderate headaches. My rheumatologist says,"you should feel good now that the steroids are done."
What the heck! I've been sick for a year, had a horrible time with the prednisone that he said would put me in remission: I swallowed it folks. So why do I feel so crummy? Is this normal? Will things get better? When?
I need some light.
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Blurry62
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Welcome.There are some experts on here but sadly I'm not one. What I have read on here though makes me think how quickly you have come off pred. That could be why you are feeling so crummy. The deadly fatigue is terrible, isn't it. You have to listen to your body and rest. The wise ones will be along with great advice for you. It is a comfort to talk to people in the same situation and I hope you find out what you want to know from the experts. Take care
Yes, this site is wonderful for support. It takes a long time to get over the wallop of this illness. I ‘only’ have pmr, but understand the draining effect of being sick for a long time. ( 4 yrs for me, but feeling good these days 🙏). It can be truly depressing and exhausting, but also, if you’re still feeling bad, it sounds like you might need continued treatment? I’m sure some of our members will have some great advice for you. Good luck. B.
Sorry, I’m not an expert either but I know enough to be a little dismayed by the fact that you’re off steroids after only a year of GCA. Even the formal guidelines for reduction of Pred which were still too fast for me, don’t stop after a year. As an example I started on 60mg and am now on 3mg, 22 months down the line. There are two concerns here 1) The condition is still active which is likely given that it generally lasts at least 2 years. 2) You are very likely suffering from adrenal insufficiency from too rapid a withdrawal. To say you should feel good now the steroids are gone is so wrong in my opinion and it shows this medic doesn’t know his Endocrinology, hasn’t read up to date research and guidelines or is one of those that thinks he knows better. I would imagine you felt awful merely from the withdrawal effects going so fast which can feel as bad as the condition itself. The weight gain could have been avoided to if you’d been advised to cut all simple carbs such as potatoes, bread, pasta, rice, flours, maize, etc. At least though, you can sort this one yourself from now. Search on here for bone health and make sure you incorporate bone boosting foods.
What dose did you start on and how were you diagnosed? Which country are you in? Did they give you Vitamin D and calcium along the way? Did they check your bones before the Pred?
Anyway, there’s lots to say but I’ll stop because it just gets overwhelming. It does get better but I think you’ve been made to run before you’ve got out of the pram. As to what to do (it’s easy for us to rant but you’ve still got to deal with it), see what comes of the other replies and some sort of plan can be made.
They did a dexa scan a few months inn and it returned a -2.1
I was low on d3 and had that addressed. I still take a hit of that once a week:5000
I need b12 now but didn't tolerate the injections. I was weepy and angry. The gp said I need counseling. I've read that many people have this reaction. Clearly, he doesn't realize many patients do poorly on injections of methylcobalamin. I'm going to go tomorrow to the health food store for hydroxocibalamin to try instead. I have always had a healthy diet but, now im juicing organic fruits and vegetables each day and eating anti inflammatory and non gluten( as of four days ago. ) im allergic to lanolin therefore, I couldn't take calcium citrate: I've been drinking all the fortified almond milk I can.
Last night I had a headache that woke me and required a pain reliever. I took it upon myself to take four mgs of prednisone two hours ago.
So sorry you are feeling so rough. You will get answers here.
What dose of steroids are you on now?
Many doctors encourage you to reduce dosage too fast, and what might be helpful for you to realise is that the steroids do not ‘cure’ GCA or PMR, but just deal with the symptoms so that you can cope.
While you are lowering the dose of prednisolone you need to be sure you do not go below dose necessary to keep the disease tamed.
You may be on too low a dose.
Or you may be doing too much.
GCA is a serious illness, and you will need to rest more than you would have felt normal for you before, otherwise you will feel CRAP.
Dorset Lady will be along later with some good info.
I increased my dose to four mgs this morning because I had a headache last night that woke me up. What you said makes sense to me. I felt better at four. Does everyone feel terrible on steroids? Does everyone lose bone density etc?
Pred does not "put you into remission". Pred manages the inflammation that causes the symptoms and it is due to an underlying autoimmune disorder - and pred has no effect on that autoimmune component at all. The pred is to relieve the symptoms while the a/i bit chugs away in the background, creating a new dollop of inflammation every day until it burns out and goes into remission. That rarely happens in a year, even for GCA, and for most people I know with GCA it takes more like 3, 4 or even 5 years.
It is impossible to say - but the headaches make me worry that your GCA is building up again. Did you have raised ESR and CRP levels at diagnosis? If you did, have they been checked regularly while you have been on pred? And, above all, now post pred? Did you have a biopsy or ultrasound done originally to confirm the diagnosis?
There isn't a lot for me to say or ask that Snazzy hasn't already said. You are in the USA I assume (prednisone) - where? You deserve and need a rheumy who knows what they are talking about - because I'd dispute the one you have seen does.
Thank you for replying to my post. It's alot to take in. How do you wrap your mind around this thing? It's so unmanageable. I feel like im herding cats! I was diagnosed via biopsy after presenting at hospital with headache and bulging artery on forehead. My sed rate was checked each month and always in range of normal. The highest it ever got was 14, which is why gca was not on my gp's radar (according to him) yes, I am.in the USA, in central missouri .... I get treatment at the university hospital clinic.
How do you wrap your mind around it? Well it does help to have a competent doctor and be managed properly. Then it ISN'T like herding cats. Dorsetlady and Snazzy can offer more advice than I can - I don't have GCA, just know all the background.
I won’t add anything, others have covered it, other than to say your Rheumy obviously has little understanding of GCA. Plus, have a read of thus, and get yourself a sensible replacement Rheumy -
How do I find one? It's so overwhelming. This one is really eager to use actemra on me. He has talked about it often and had me go through four months of rifampin treatment for latent TB so I'd be a candidate for actemra "in the future'" I m afraid of biologics.....
I guess you’re not in UK, but I’m sure if you raise a new post stating what state you live in asking for references to find a good Rheumy you’ll get some responses.
Actemra has only recently been approved in UK for use in GCA, but I know it’s been used a lot longer over your side of the pond. It suits some, but not others, I guess the way to find out is to try. But my personal opinion is why add in another drug which is only in essence a steroid sparer, not an alternative to steroids.
No one wants to be on steroids longer than they have to be, but I despair at the way some Rheumies rush their patients off it.
They probably do when they are studying. But of course new medication is always being produced. I remember when GPs used to have a book which gave them all the details of drugs and what could be taken with what - haven’t seen one being used in years!
Just as an aside in regards to your reply to PMRpro, once you are on the Pred your blood markers should be lower. However, all that shows is that the Pred is keeping the inflammation caused by the underlying disease (whether GCA or PMR) under control - it doesn’t mean the GCA is gone or even controlled!
Not a lot of doctors know that - why is beyond belief especially when they are supposed to be the experts in that field!
I am sure they all have one hidden away somewhere. It would be incredibly difficult to operate without a copy. I think they have a new one sent monthly. Perhaps some are now using the internet.
I heard once that the average GP only normally prescribes twenty products, I suppose for them they do not need to look up. It is just the odd one they do.
But if he has taken you off pred in a year there is no justification for use of Actemra - although if you have a flare it will be his fault for stopping the pred, not because you need Actemra. Wonder what his bonuses are from Genentech...
What is a flare? Is it a full on gca attack that requires 60mgs of steroids all over again ? Or is it described as any time the gca symptoms begin to break through the steroid barrier- and lower doses are used to push it down again.
Depends how long you leave it. If you realise the symptoms are returning, especially after having reduced the daily dose, and then go back to the previous dose it will never get that bad. OTOH, if you ignore signs that you new dose is not enough then the inflammation will build up again and you can well end up back at a stage where you need a much higher dose. However, it is generally accepted that 40mg would be adequate providing you don't have any visual symptoms.
There are occasions where what appears to be a full on episode of GCA may appear quickly - just because you are on pred it isn't guaranteed to prevent that and the lower the dose the faster the inflammation would increase. That's why you need to be watchful.
Does anyone know if the recommended tapering schedules for GCA and PMR are different at the lower steroid doses, say from 15mg and below? I have GCA, not PMR, started at 60mg about 6 months ago and now on 12.5mg, with blood tests at each taper and maintaining normal markers. My helpful - not - rheumy says he worries about people who can't get below 10mg.
The Quick and Kirwan paper has the same taper from where the PMR dose would start - see the box on p346, dropping from 20 to 15mg in one step and then 12.5mg and 10mg. From 10mg it is 1mg at a time. (The PMR box is a couple of pages before)
Pinks, of course your markers are low, you are on Prednisone. You will want to consider slowing way down with your tapering at this point as Stated above GCA tends to stick around for 3-5 yrs. you want to find the lowest dose that controls symptoms. There are several slow tapering plans on this site. As PMR pro says, the biological such as Actemra should be considered only if one can’t taper to lower doses or Pred side effects can’t be managed.
My rheumy hasn't yet given me a tapering schedule below 9mg, and I am gathering as much info as I can to ask him about alternative treatments and/or tapering should I have problems below 10mg. I am to go down 2.5mg from 12.5 to 10, and then 1mg to 9mg, and thereafter who knows. I will be very vigilant as I go lower, as PMRpro has suggested here. It is a fine balancing act between staying on a toxic drug longer than necessary, and coming off it too quickly and risking a relapse. I can understand why you are confused, blurry62, and I hope this helps. Thanks PMR2011 for your helpful comments.
Really - if you get to 10mg OK I wouldn't even think about alternative treaments. To get to this sort of dose at the speed you have is excellent - adding in other drugs should be kept for patients who struggle to reduce at 20mg or above. Low to moderate dose pred for a few months is potentially far less risky than these other drugs may be. The long term effects of the biologics are not yet known - and some doctors are too keen to use them. Not sure if it gives them a power complex or what but they are too keen to jump on bandwagons. There is a place for the fancy stuff - but not too quickly and care is needed.
Very reassuring to hear that about my progress, and thank you for your sound advice on alternative treatments. There is so much that we need to know as sufferers to best manage our illness , and forewarned is forearmed!
It does seem that half a mg a month works reasonably well under 10mg. I could never do 1mg or more a month but some people go for it. The important thing under 10mg is to take it slowly I feel.
I tried calling the rheumy this a.m. but it's a holiday. Left a message with triage service, they contacted him and reported my headache. He sent a message through them- instructing me to take 10mgs instead of the half. I'm supposed to call the office and make an appointment. My head's still smarting but the muscle weakness is improving already.
I feel confused that he doesn't really take the GCA seriously despite biopsy confirmation and your textbook symptoms. I know PMRpro knows the right figure but I think it's something like 20% of GCA patients have inflammation numbers which are considered in the normal range. This is why symptoms should ALWAYS trump these tests. if things continue to deteriorate in spite of the slight increase in dosage can you go to your emergency department? Or, if you have to see your current rheumatologist, take someone with you if you can for support. Someone who will quietly take notes....
Up to 20% is the accepted figure. And there are people who have GCA with no symptoms at all until they wake up with visual loss. Though Hayreh who specialises in the field insists that all patients have raised CRP - which is wrong. Some don't.
I'm taking my husband for support and help with the conversation. We are also trying to regroup and figure out what my options for care are. We are still trying to recover financially from last year too--- it's daunting......Thank you for your in put. I really value and appreciate it.
I started college st 59 yrs. Felt really spunky and healthy...motivated. My Mark's were wonderful and during the second year GCA hit. My grades stayed up but I had to take a year off to try to get my health back. Will I ever feel well enough to finish my education? Is this too much to expect?
I am so sorry you are struggling. I do not know how long you have been off Prednisone.
When I lowered my Prednisone from 30mg to 3 mg after starting Actemra shots, I felt awful.
I was weak, shaky, no energy, and stayed on the couch for 2 solid months.
My doctor said it would take awhile for my body to adjust. Some say it can take up to a year.
Just keep an eye on your GCA symptoms. I hope your doctor is keeping a close eye on you and your blood work. GCA is not something to take lightly.
I have GCA/PMR going on 3 years. My doctor said I need 2 years on shots with no unusual symptoms or blood work to even considering weaning medicine.
However, each case is different. I would want my doctor to monitor me carefully. It is normal to feel like you are after weaning off of Prednisone. At least, it was for me.
I am curious why the doctor thought to wean off all Prednisone?
Your symptoms must have been adrenal insufficiency and could have been very dangerous. Glad you made it through. What an ordeal, and I'd suggest an unnecessary one, but what do I know? I'm not a doctor.
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