I've been on Pred since my diagnosis end of Jan. Think they reduced my doseage to quickly & when I dropped from 30 to 20 mg symptoms started coming back so I've now been on 25mg for 4 weeks but I keep getting sudden again stabbing pains in my head- along with a 'fuzzy, prickly' feeling. No headaches but I'm supposed to be reducing down to 20mg from Saturday (I've decided though that I will only go down to 22.5mg. to be on the safe side). I've phoned the Rheumy nurse at the hospital & she said this isn't normal & she's going to speak to my Rheumatologist after his clinic this morning. Has anyone else experienced this & what does it mean? I'm really hoping I don't have to increase the dose even more.
GCA - tapering & symptoms: I've been on Pred since... - PMRGCAuk
GCA - tapering & symptoms
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Janeval
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31 Replies
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DorsetLadyPMRGCAuk volunteer
As you say, too fast a taper down to 20mg...and in hindsight you probably should have stayed at 30mg rather than 25mg. But that ship has sailed...
Are your symptoms random, or can you identify anything that may tigger them?
I wouldn't be surprised if you are told to increase to at least 30mg until after the weekend when you can get blood tests done... even if you aren't, certainly no more tapering until things are sorted.
Please let us know what advice you get from Rheumy...
Symptoms are just random really. Like this morning- I've been shopping & am getting the odd stabbing pain randomly over my head. I also feel exhausted, so going home to do nothing- again. The fatigue - suddenly hitting a brick wall- is random too. Also forgot to mention in getting dizzy spells week-again, not had them before & they seem to be increasingly too. I don't like the way this seems to be going....
if you haven’t already spoken to Rheumy -please mention all these symptoms.
Personal opinion too fast a taper -so GCA not under control….
That sounds like when my GCA was revving up before Pred and when my dose wasn’t being absorbed properly (long story) in the early weeks when I was still on 40mg for 6 weeks.
I was just reading that you also had breast cancer- so did i, 6 years ago - chemo, radio, herceptin & now on AI inhibitors for 10 years(another 4 to go)- I do wonder if all the treatment is linked in any way to getting the GCA in any way.....? I also developed Peripheral Neuropathy from the a chemo- in my fingers, but especially my toes - which has definitely got worse since the GCA was diagnosed. I just wonder??
All these things are assaults on the body, so who knows what does what. I think the inflammation I got in my blood vessels due to chemo and particularly a hormone blocker (could feel my abdominal aorta being fatter as well so doc stopped me immediately) that introduced my body to the idea of attacking it’s arteries. My peripheral neuropathy was blamed on the Taxol chemo but then cleared magically after a few months of Pred for GCA not to return. In the run up to GCA from the cancer I also had 13 years of unrelenting stress and life events so something was going to happen one way or another.
Yes, the stress factor is part of my problem too I think. Last year was bad but since Xmas much worse & I now have an ongoing family issue which isn't going to go away- certainly not this year. I've been on a waiting list to see someone to talk to as I need strategies & ways of how to deal with all this as I know it is really bad for me. I am a worrier anyway unfortunately & this latest issue this year is really pushing me to the limit. Not good atall.
Janeval, I had the same issue with dropping too fast from 30 to 20, then had to go back up to 25. This also started for me in January, like you, so I'm also new to this and trying to learn fast. I have PMR without GCA (at least I think so).
Snazzy and Janeval, my stress was also through the roof when this disease hit me. It seems to be a common theme. I have tried to reduce my stress, and I've succeeded quite a bit, but I'm at the top of my career, so it's difficult sometimes. But I'm committed to my health above all else.
Wishing all of you fast healing and the best outcomes. Happy to be in this community.
I hope you're in the clear now, but I must say, I recognise the prickling. You have certainly reduced faster than I was told to: 60-50-40-30-25-22.5-20, all for a month. After that I only dropped by 1-2mg at a time. some of the worst side effects did start to recede below 20mg.
Yes, now knowing what I know I think they've reduced me far too quickly & now I seem to be stuck-Rheumy has just said i have to take 25mg for another 2 weeks(that will be 6 weeks in total) & then to see how I am doing before he reduces me. He then said he may put me on Methotrexate which I really don't want to go on (& I told him this) so he said he would go through the pros & cons of it & it's my decision. He also said the prickling/fuzzy feeling on my scalp, the dizziness & the pains were normal for GCA although the Nurse I spoke to said they weren't normal!Have to say I feel very low now & quite distressed about all this- he did point out how serious a condition it is & that I have a bad case of it (??) I have also noticed my face is getting fatter (even though I've hardly put any weight back on that I've lost) & I seem to be developing a 'dark moustache' which I presume is from the steroids? So I'm feeling a bit sorry for myself. Sorry but it just seems to be one of those bad days today. At least on here people will understand!
Thanks for update - thought he might have increased to previous dose -that’s usual procedure as per guidelines
Agree with him that your symptoms are likely to be GCA -but if he thinks that, then why not increase?
I’d be inclined to hold off on the MTX as well and try and negotiate for slower tapers…next time you speak.
Chubby face and increased of darker facial hair is side effect of Pred for many -but does reduce as you get lower.
Unfortunately you will get bad days - and yes it is a serious condition (but not as bad as many) - but at least it’s been diagnosed and treated and you haven’t suffered sight loss…. and yes we do understand-and send virtual hugs 🤗
Well I'd say they are normal for GCA - but shouldn't be normal for a patient on enough pred ...
This happened to me when I reduced too fast from 40 - symptoms like yours. Probably not just GCA but impact of reducing pred quickly. Your rheumy has you stabilising on the dose. My rheumy calls it 'letting things catch up'. I suggest you start a symptom journal so that you become familiar with what is happening in your body. This will allow you to understand the difference between GCA still being very active (and later on the possibility of flares) and the type of intermittent low level head activity which is acceptable and to be expected. Obviously keep an eye out for symptoms getting worse, jaw issues or eyes.
What I've learned from this forum and personal experience and talking with rheumys is that rushing down the pred is not going to work. It has to be guided by the symptoms.
The good news is that although GCA has challenges, particularly until you get the measure of it, it is reasonably manageble, it will go in time and once you are stable you can lead a normal life so long as you don't overdo things. It is not worth the anxiety of worrying about it (Of course I did, but I wish I hadn't). The moon face will get better as the dose lowers and hair will resolve.
I don't know what is the point of adding further medication at this early stage.
Good idea to keep a symptom journal- I will do that, thanks. I am learning to not do as much as I would previously have done as my body just says enough now & I find I physically feel drained if I don't sit & relax. Very frustrating & debilitating but I'm having to do it now!
GCA is an invisible illness. If you'd broken your leg there would be no question about having to rest, allow the limb to heal and then manage a relatively lengthy rehab, but because no one, not even yourself, can see that you have a serious systemic illness it's all too easy to assume the medication is all you need and everything should be ticketyboo. Be really kind to yourself, take all the time you need to stabilize this illness and its treatment. Hopefully the doctor will grasp the (to us rather obvious) concept that successful treatment through proper use of pred is preferable to messing around with other medications because of unwarranted fear of pred. The more you're allowed to have the dose of pred you need, the more successful the taper will be, and ultimately most likely will lead to a lower total intake of pred, rather than more. Good Luck 🍀
Sorry about all you're going through - I'm GCA, down to 4 and a half Pred (plus TCZ currently ) over the past 2 years 8 months ... I flared after being reduced too quickly, had to go back to maximum, now, since 10 msg, I reduce by half a mg every three weeks. (My schedule). Currently lots of aches and pains and fatigue - I self-diagnosed (thanks to what I'd absorbed from here ) as possibly having adrenal insufficiency - and now two different endocrinologists (one via GP, one at hospital) are diametrically opposite in their view on this, because blood results varied wildly over a four day period. ("Not helpful, is it?" asked the Consultant rhetorically.) Anyway, I agree with everyone, go as slowly as you can bear to unless it's advisable to increase for a while - but when you can reduce again, go really slowly. Oh, and yes, face does go down gradually, as everyone says..x
Yes, here it's normal not to be normal! Somewhere around 15mg I found the chubby face and darkening sideburns😧 quietly disappeared. So you may not have too long to go now! I had pricklingover my face. My rheumy dismissed it, but at one of the PMRGCAuk talks by a professor, he said it was absolutely part of GCA
I was also given MTX. It didn't do me any good, or harm, except that most of my hair fell out. So if you have it, watch out for your hair and as soon as it's starts to fall, if it does, ask for the folic acid to be increased. You can take it up to 6 days a week, every day except the MTX day. A few people here have found it helpful. The good thing about it is that if it doesn't agree with you, you can stop it at once, without any tapering. I am impressed that your consultant was prepared to give you the pros and cons!
The other good thing is that, as you have bad GCA, if you can't reduce far enough, you may well be offered TCZ, which IS likely to help.
It WILL get better!
Thank you to both of you & yes DorsetLady I was expecting him to increase my dose as I've been getting these symptoms for nearly 2 weeks now. However, yes I'm going to ask to reduce a bit slower when I do start to reduce again! It's also good to hear from both of you that the face & dark lip hair is a side effect! As for the MTX I really do want to avoid it- especially as I lost all my hair when I had Chemotherapy 6 years ago & I really don't think I could do that again at the moment. I'll just have to hope I get back to being able to reduce soon. Thanks again for all your advice & your support- most appreciated
Yes. I had a GCA scare in January gone by. Have PMR and on Pred since Jan '22. ER doc consulted Rheumy on call and she upped me to 60 mg. Had pains in my head, jaw, etc. Had a TA biopsy done Feb. 1. GCA ruled out due to "no signs of healing or weakness" in the tiny piece of artery they took. This is the only time I was able to actually see my Rheumy, who is a "fast taper, let's win the race" type. So she immediately dropped me to 50 mg. some pains came back, so I went back to 55 mg. which seemed to help. I have been reducing by 5 mg. every 2 weeks. From 40 to 35 mg. is not going well and it's been 5 days. The fatigue and weakness in legs is getting to me as well. Random sharp pain where incision scar is (concerning to me). Random pain in front forehead right side when I lightly touch along my brow. Random pains in head which I cannot explain. They "just happen". These had stopped. Now this morning woke up with headache and neckpain up back of neck. I refuse to blame my pillows as I did when PMR started. Sooo....I don't know if I have GCA, but I have the symptoms. My right eye vision has been affected for months and one of the reasons I went into the ER. It is very slightly blurry, even as I'm typing this reply. I use eye drops constantly so it's not dry eye. Ophthamologist who checked eyes a few weeks after biopsy (and couldn't figure out why I was there), said "no signs".
At this point I have no GP and "my" Rheumy is never reachable. I may go back up to 40 mg. for a bit as I felt okay there, but the Moon face just keeps getting bigger. Can Moon Face and donut neck put pressure on various nerves, muscles and arteries? Loaded post I know. I feel we should get checked out.
Hi Janeval, Yes, I have had those symptoms. I don't know if they were related to the pred or the GCA, but I would get the fuzziness but not dizziness, also a feeling of chills, on a higher dose of 25 to 40mg, especially on the two occasions when I forgot to take my pred but lower than 25mg I saw improvement.
I still get the odd stabbing pain in my head, usually behind my right ear. I also get tenderness in my upper temple near my biopsy scar. My rheumy is not concerned because all these symptoms are transient, only lasting a few minutes. I'm now down to 5mg by the way but have had these symptoms all the way.
Yes, my fuzziness has actually worsened today & now I'm getting more pains all over my skull. I took the 25mg as normal this morning but I'm just wondering whether to take another 2.5/5 mg tonight as well- or do I phone 111? I can feel it's getting worse- although it's not a 'pain' as such- more of a heavy prickly fuzzy feeling all around my skull & over my head now. Of course now it's holiday w e. - no doctors, a & e will be packed & of course no one to ask.
I'm not an expert, but if it's not affecting your eyes, I would suggest try taking paracetamol first, see if that helps, if not, go to a local walk in centre tomorrow.
No, my eyes are the same. I took some paracetamol this morning which actually did ease it a bit so yes I'll try again now & see how I go. I have a good supply of Pred if I should need it anyway!
This is so difficult Janeval
I have GCA and reading these posts reminds me of the first year, when I was constantly getting the kinds of pains, fuzziness, altered sensation in general, that you describe. I was always on the point of a pin, trying to decide whether it was an emergency or not, and not knowing what to think…..
My feeling for you is that it wouldn’t hurt to go to 30mg until after the Easter weekend, when hopefully you’ll be able to get medical advice. And I agree with others, take paracetamol, which I often found helped, although it’s obviously not dealing with GCA at all…
I think what I found hardest to deal with at your kind of dose was the combination of anxiety about GCA and sight issues, with the side effects of steroid withdrawal. These can be so similar to GCA that it’s really hard to know what’s what 😞 So you really are reassessing almost on a daily basis.
However, I ploughed on very gradually, and now, two years later, am on 8mg, tapering to 7.5. I’m happy to say that although the fatigue remains, in general I feel much more like my old self 🤞So, onwards and upwards, things will improve 🤗xx
Just bear in mind, if 30mg doesn’t help, or if you get visual symptoms, go to A&E immediately 🏃♀️however busy they are. Otherwise, try to relax if you can 🤷♀️🧘♀️
All the best to you 😊xx
OK, so I'm 2 weeks further on - went up to 30mg for a few days, tried to call the ' specialist nurses' at the hospital - left 3 messages before someone got back to me. I told her that I'd had a recurrence of more random head pains, prickling etc, so had 'upped' my dose of Pred. She said that I should not be ' self medicating' but as I said, I couldn't get to speak to anyone, so what was I to do after 2 days?? She told me to go for a blood test - which I did - & my CPR & ESR are now normal. When I rang to find out she said they were normal so she couldn't understand why I was getting pains & headaches as it wouldnt be the GCA. However, she said it might be my adrenals trying to work(at 30mg a day) Honestly, i have no faith in what they're telling me & they really dont seem to understand.Told me to reduce down to 25mg again this week (which I have done) but now the pains are niggling me more as I reduce- is this normal?. I am also supposed to go with what the Consultant told me 5 weeks ago & reduce to 20 from this w.e! I am very dubious about this & have decided not to drop by 5mg overnight. I have some 1mg tablets so am wondering whether to go down by this every few days or so? Anyone else had this dilemma? The Nurse also told me that my blood sugars were very high - i asked her what she meant and what were they? She said I was steroid induced prediabetic now at 6.9. She didn't say anything else, no suggestions on what I should/ought to do/whether I should have regular blood tests or anything. So I've phoned my own Docs & asked to speak to the Diabetic nurse for a better understanding of this.
I also lost 1 1/2 stones at the start of this year before I was diagnosed with GCA & have only put 6 lbs back on so far, so I cannot afford to lose any more weight. I eat very healthily, very little sugar and always cook fresh foods, so if I go on a low carb diet I will more than likely lose more weight.
So, the problem is I am getting different suggestions/messages from my Rheumatologist, the specialist nurses and my own Doc (who says he never goes by what blood tests say!) I really don't feel confident or supported in what I should/should not be doing. Anyone else with GCA u derstand where I'm coming from??
Well I don't see your adrenals trying to do anything at 30mg pred - it does make you wonder doesn't it!
Yes, Janeval, I have GCA and I get where you’re coming from!
Re your current ‘niggles’ on a drop of 5mg this week, I’d say this could well be steroid withdrawal. This is likely to happen soon after you drop, and should gradually improve. If it gets worse, it’s more likely to be a flare. So…..I agree, I wouldn’t reduce again to 20mg as the consultant said. In fact I would not reduce until you’ve felt stable for a good couple of weeks (and I accept I’m not a doctor, but it’s what I’ve found from experience).
Good idea to speak to diabetic nurse and come up with a long term plan. As you say, you don’t want to drop more weight and you want a diet that’s sustainable.
As to which doctor you listen to, well, I’m not sure but is your GP someone you could have confidence in? There’s a hint in you post that he may listen to you?
All the best 🤗xx
Thanks for that- I did wonder about the withdrawal so I'll stay on the 25mg for maybe another week- see how it goes. Hoping to speak to the nurse tomorrow & yes, I just happened to see this particular Doc who I hadn't seen before & he had dealt with GCA patients for a number of years so I do feel he's probably the best of the bunch so far! I'll have to see how soon I can get an appointment with him.
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