After being diagnosed with GCA in late April 2019, I began a low dose (5 mg) Prednisone treatment, increasing this dose until I reached 40 mg in mid May. Increased again to 50 mg by mid June, but had to begin tapering after 3 weeks because of severe side effects. I was down to10 mg by the beginning of September and began treatment with weekly Actemra injections at the beginning of November. My CRP and sed rate were normal after 2 injections. I’m struggling with the Prednisone taper - continued hair loss, severe nausea, some night sweats, disrupted sleep and intermittent ringing in my ears. I reduced by 1 mg for 2 weeks (to 8 mg) and will try a .5 mg reduction after the New Year. I am taking Ginger Gravol as well as regular Gravol daily, drinking ginger tea, and meditating to deal with the nausea, but with limited success. I am starting a prescription for Ondansetron (Zofran) today to try to control the nausea. I’m washing my hair twice a week with gentle shampoo and using hair repair treatments. I am hoping other people can share coping strategies for the nausea and hair loss. I’m also hoping other Actemra patients can share any experiences they have with this drug. Will the headaches and fatigue ever go away??
I’m a GCA patient who is new to this site... bein... - PMRGCAuk
I’m a GCA patient who is new to this site... being treated with Actemra and having a difficult time with a prednisone taper
Hi, and welcome.
Sorry can’t help you with the Actemra side of things - wasn’t sanctioned for use in UK when I had GCA. So not sure if the nausea is caused by that, it’s not usually a very common side effect of Pred.
However I am concerned that you still have headaches, again not sure if that is a side effect of Actemra- but sure someone will advice (probably from your side in the pond where it’s used more).
If it’s not a side effect, then I would question that GCA has ever been properly controlled by the Pred - you seem to have a strange beginning with it.
Incidentally what severe side effects did you have ? The sleeplessness p, sweaty nights and hair loss will improve as you lower the dose of Pred. However the ringing in your ears could again be your GCA not properly controlled.
You are doing the right things about hair loss, just make friends with your hairdresser who knows all about these problem and may be able to find you a “better cut” to hide the worst effects. This will also improve in time - it’s not necessarily the medication, it’s the fact that you are ill, and have been for some time.
As for the fatigue - are you pacing yourself - have a look at this post - healthunlocked.com/pmrgcauk......
Thank you so much for your reply!!Please bear with me as I share my horrible journey.
Yes, it was an unusual treatment - I was originally misdiagnosed with cluster headaches by a neurologist in January and was prescribed Gabapentin. After 2 months with worsening symptoms, he ordered bloodwork, but didn’t contact me when the results showed high CRP and sed rates. My family doctor got a copy of the results, thank goodness, and referred me to a rheumatologist; I had a temporal biopsy that came back negative because the surgeon removed a piece of a vein instead of the artery; the second biopsy came back negative. The lower dose prednisone was because of a prior reaction to prednisone. An MRI in July confirmed GCA.
The side effects from the 50 mg were horrendous - it raised my blood pressure, made a pre-existing heart arrhythmia worse (had to be put on heart medication), gross motor skills and balance were affected, became pre-diabetic, developed a severe hand tremor, had cognitive issues - as well as the “regular” side effects - insomnia, moon face, shaking...
I will check out your suggested posts. And as for pacing myself...I try, but being type A, and very active (prior to. GCA) I find it extremely difficult and frustrating to rest. (I think too much then.) And it really doesn’t help....
It’s been a very long and difficult year and I am so grateful to have stumbled upon this site. Thank you again for your reply!
Hi again,
Certainly a chequered past and difficult journey, but then so did many of us.
As or being a type A, again very similar to many of us, one of the reasons why I think we succumb to these illnesses, but you do need to take pacing seriously.
You don’t have to sit and do nothing, but change your physical activity to a mental one, maybe one you haven’t done before - that way you have a new challenge to think about rather than being frustrated because you aren’t doing anything.
No matter how good the drugs are, so long as you have the underlying GCA you do need to learn to manage it (and that means resting to combat the fatigue), and the better you do that, the easier life in general becomes.
Take care.
Thank you...I’ll try to make this a priority.
If you had a diagnosis of GCA in April 2019, why were you started on only 5mg of pred? Even with Actemra being used from the outset, the pred dose is supposed to be at the normal level - the Actemra only allows faster tapering and there is no evidence that it is able to reduce the swelling quickly to reduce the risk of visual loss. In fact, in half of patients, even on Actemra there remains a need for a low dose of pred, not everyone is able to dispense with pred altogether. You were relying on low dose pred to manage GCA - while I do appreciate that the adverse effects of higher dose pred are unpleasant - however, other than possibly the psychotic aspects, none is worse than the ultimate adverse offect of GCA: irreversible loss of vision.
Some of the things you mention could be due to inadequately managed GCA - especially the tinnitus and possibly the nausea as that is also associated with the 8th cranial nerve being affected. Hair loss may occur because of poor blood flow to the scalp although then you might expect scalp pain too. The sweats are also a common symptom in GCA.
Hello, I guess I should have gone into more detail in my original post - sorry - I was originally misdiagnosed with cluster headaches and prescribed Gabapentin by a neurologist. After 2 months with worsening symptoms, the neurologist ordered bloodwork, but didn’t contact me with the results that showed high inflammatory markers. Fortunately my GP saw the lab report and referred me to a rheumatologist; I started on a low dose of prednisone and worked my way up because of prior difficulties taking prednisone. Thank you for suggesting calling the doctor - I often feel I am bothering him and try to manage my symptoms by myself -I’ll call my rheumatologist after the New Year holidays are over.
You said you had no side effects from the Actemra; the nausea and fatigue were worse for me a day after my first few injections; my scalp is very itchy, especially the day of and a day after the injection. But I’ll take this any day rather than the horrendous Prednisone side effects!
Thanks again for your reply.
I think you have confused me with Devoid - I have never taken Actemra.
So sorry...Prednisone brain fog!!
Finding your treatment regime difficult to understand, not sure that crp is a relevant test once you are on actemera?? . I m on actemera having struggled with steroids and methotrexate. Now reducing the steroids, think you need to speak to a doctor regarding medication and side effects, personally I had horrendous side effects from higher doses of steroids but none from the actemera
Did you ever have an itchy scalp a few hours after your injection?
GratefulBailey,
I have GCA and PMR (about four years ago) and was put on 60mg of Prednisone. I started out at 60mg and worked down to about 20mg but was having very bad Flares. I was put on Actemra/Tocilizumab, an injection every two weeks. I was able to drop my Prednisone more rapidly. I have been on Actemra for over two years with no side effects...yet. It is very effective for me but I am still on 2mg of Prednisone and according to my Rheumy I will be on it for a long time. Both medications have improved my quality of life significantly and my Rheumy says 2mg of Prednisone should have negligible side effects and so far it has not. I hope this helps.
Thank you for your reply...I will be reducing my Prednisone to 8.5 mg tomorrow (down from 8 for the past 3 weeks) I think my original taper was too fast for me (I was on 10, then went down 1 mg each week to 8. I felt horrible.) I’ve been on Actemra since the end of October, but am still having headaches, although not nearly as bad as I was when I was on just Prednisone. I was told it can take 3 months before the Actemra is fully working...did you experience that? Also, I really feel “off” the day after my (weekly) injection. Is this the same for you/was it originally like this for you?
Thanks for any information...Happy New Year.
GratefulBailey,
It did take about two to three months for the Actemra to make a difference. For the first 6 months to a year I did feel the effects the next day but it improved with each shot. I take a shot every two weeks and I think that makes a difference. I would think that weekly should be faster but personally I believe that just like tapering Prednisone, slow is better. I don't have a medical background so take what I say as one persons experience. I hope this helps.
Thank you for sharing this! Yes, it has halted me immensely! I have just passed the 2 month mark and for the first time ever, I have been headache/eye pain free for 3 days. I still feel “off” the day after my shot, but again, it’s not as bad as when I first started the shots. I’m now down to 7.5 mg Prednisone and am slowing the taper down to .5 mg every 2 weeks - just too hard at 1 mg Taper. I’m very worried about my hair loss. A friend recommended Revive products (Amazon) and I’m trying a lot of home remedies courtesy of Pinterest. I’m practicing gentle hair care, but nothing is helping. I’ve read other posts about this being a side effect of Prednisone...wondering if you experienced this.
GratefulBaily,
When I tapered I also only tapered .5mg at a time. With every Actemra/Tocilizumab shot it seems to get easier. My Rhuemy told me to stop at 2mg or 1.5mg of Prednisone and that is where I am now, 1.5.
As for my hair, to be honest I wore a hat a lot and did not wash it
my hair much. Washing it daily seemed to be a problem for me. It does come back as you lower your Prednisone, at least it did for me. I hope this helps.
Yes, thank you...you’re giving me hope....
Hi GratefulBailey
I'm having the same problem with my hair, it was thinning anyway due to the menopause but has got a lot worse since being on the pred, I've been taking some supplements from holland and barrett, hair skin and nails ,biotin and folic acid, I think it helps a little, I'm also using planter 39 shampoo and conditioner, it all works out quite expensive but I'm willing to try anything, hope this helps x
Thank you for sharing....I’m taking Biotin as well as Biosil. I ordered Revite hair thickening spray and a scalp treatment (Revite as well) from Amazon. (This product was recommended to me by a friend...don’t know if it’s available where you live.) I’m just starting to use it, so can’t comment yet if it works for me. This is quite expensive as well, but I am like you, trying anything that might help.
These are important side effects but unfortunately can be caused by either medication.
It could be that the side effects to Pred are worsening while your body also copes with processing the Actemra as well.
Equally you could still be having Pred side effects , but milder ones , and the new side effects are because you are also intolerant to Actemra , just as you were to high dose Pred.
Another option is also that you are having Hypersensitivity reactions to Medications in general because of your other preexisting Health problems , or because you are having Thyroid dysfunction which may existed at a low level before GCA , but having to take extra medication and deal with the burden of using medication has made Thyroid issues more severe .
If you haven't had your full thyroid panel ( not just TSH , T3 and T4 ) done I would suggest you request to get it done by the GP as soon as possible. Have your inflammatory blood markers rechecked. Also have iron and folic acid and a full electrolyte and kidney function panel. These blood tests will help them decide which parts of your body your side effects are mostly affecting . As it may turn out , just as with using medication for nausea that they can find you another drug to counteract these side effects when you need to be on medication to control your GCA.
You need to have your GCA treatment ,speeding up the taper will not be good for you unless a good alternative to the higher dose steroids is found to substitute for the Pred.
If you are still struggling on Actemra they need to know to see if they have to make further drug changes to help you control the GCA without causing such severe side effects.
Last , request a little used but often telling blood test , TPMT .
I only got it via a Rheumy but it came back borderline Low , proving that I have difficulty and intolerance to high doses of many types of medications including Steroids and certain types of Neurological and Opiod medications ( including Garbepentin and Amytriptyline) , so can not take more than a minimum , or lower dose than my Diseases would usually require prescribed, without having severe side effects .
I am still waiting for approval for Actemra , but hoping .
To help with side effects in the meantime. I take cyclizine for my nausea symptoms . I use the yoghurt and honey to reduce stomach issues before Pred , and some yoghurt before meals. I did use ginger but discovered I can't use it much now as it can cause problems with my heart medication.
I use a cool , slightly damp cloth on my neck or the back of my scalp to reduce itching . Light finger massage through the hair also helps as does the usual daily dose of Paracetamol and a low dose Antihistamine.
I use menthol rub ( like Vicks ) on the temples and across my brow ( being careful not to get it near the eyes ) and behind the ears and neck when the intense headaches are there , it helps with the Pain , itching and Headache associated Nausea if the cause isn't just GCA based but Migraine side effects to medication.
I think it is also worth discussing some of the rapid onset of side effects with your Cardio and Diabetic Specialist , as in part , they can also be a result of your heart condition and Diabetes not being full controlled , or causing Neurological Symptoms .
New drugs being added for your GCA treatment needs may mean increasing doses for these other issues , or, changing treatments used for them may also be required so that you can treat both your GCA and Cardio/ Diabetes properly together with less side effects.
When you have more than one health issue at once it takes more time and much more trial and error to get your treatment right for all things than it does for simply treating one Condition.
But they can't keep reducing you without a your working alternative to Pred for GCA as it will still be active after such a short time , and if it isn't properly under control will cause complications with side effects and your other health issues too anyway .
You need the Doctors input and not just the GP , but all of your Specialists getting in communication with each other via the GP to find a better solution for your more complex situation between them , not just each concentrating on their own Disease treatment and not fully taking into account the other things that affect you . When they keep acting that way nothing gets treated or managed properly.
Keep us updated with how you get on. Take care .
I was under the impression that it doesn't affect corticosteroids?
Sorry Pro , early morning, could you expand a bit please , What doesn't affect corticosteroids?
TPMT anomalies.
Yes , it was explained to me by the Rheumy that although it doesn't affect Corticosteroids , new thought is that it can be an indicator of needing requirements or more experiment with other drugs you can use with them .
Also , that it can indicate , or be a little warning sign, that there could be other Hypersensitivity / Autoimmunity factors and Intolerance at work in the Body , as yet not fully understood or with definitive tests to validate , that can cause the greater intensity of side effects to Steroids that cause the need to reduce them quicker , use Sparers , or find alternatives.
In the sense of there being a Steroid issue , they could be prepared that they need not to use certain types of other drugs ,and that there could be a Steroid issue to come.
The Prof I saw at the CoE for Behcets was beginning to start more research on the causes of Steroid Intolerance in comparison to Biologics .
He also said my Complement results could in part shed light on the efficiency of my Body to react to Steroid Treatments as well.
Oooooh - that's interesting. I'll come with you if you go to see him again 
I will let you know how his work progresses as I get info , it certainly interested me ,,as it seems to be work that is trying to get to the root cause of autoimmunity issues that he is exploring and improving immunity during steroid treatments for Immunodeficiency Patients , so it could eventually have a big impact on how efficiently treatments can work in the future with less side effects on the Patients.
Thank you for all this information! I will certainly refer to your post as needed and I will discuss the TPMT test at my next rheumatologist’s appointment.
I have just passed the 2 month point of weekly Actemra and no headache/eye/face pain for 3 days! I’m down to 7.5 mg Prednisone (tapering at .5 per 1-2 weeks) as 1 mg just too much for me).
The hair loss continues, despite Biotin, Biosil and Omega 3; using Revite products (Amazon) as well as home remedies.
Any thoughts?
Sounds like you are finally settling in with the Actemra which is good , if the pain has improved , and your symptoms are too you may not need to worry about further tests except for those required to monitor you while taking Actemra.
Can't remember did you say wether you have had a full thyroid blood panel done ?sometimes this can have an effect of hair growth , and as you are now below 10mg you would have hoped that the changes that Steroids can have on hair growth and texture would have begun to improve by now , unless you have always struggled with your hair .
Do you eat a lot of protein / collagen / Vit A and E foods . Things like eggs , seafood , oily fish , chicken , green leafy vegetables , bananas , nuts can all improve hair growth even on medication.
A full nutrient vitamin and mineral supplement a day may also help , and vitamin K2 is helpful for nail and hair issues.
Good hydration helps . You can create a conditioner from melted coconut oil , argan oil , and egg , used once a week massaged through the hair left on for 15 mins then washed out with a mild shampoo . Adding camomile oil or using chamomile teabags in rinse water can also help improve the itching on your scalp.
Some people are just unlucky though , I had thin hair all my life , so no matter what I do as different chronic issues have come in my hair thins more and seems to show the worst of it. It happened with all the women in my family so it's part of the genetics for me.
0.5 mg every two weeks sounds the quickest I'd be happy to go even on Actemra .
I think you do need to be more flexible with the Taper Timetable the Doctor gives you even with combinations of drug treatments as the doses get lower than 8 mg and look at how you feel and your whole group of symptoms to make a decision if you can go down every two weeks . Keeping an eye out for Fatigue is important from 6 mg as you head towards the point when your Adrenal System has to start working for you again.
Keep posting I'd be interested to see your progress as I'm likely ( hopefully !!) to be approved in the next month.
I was diagnosed with GCA in late August and started with 50 mgs of Prednisone. I am now down to 20. I have not had the same side effects as you but have insomnia, blurry vision, chest pain, thinning skin , bruising and bleeding, puffy face, fluid retention, foggy thinking, ++. Nausea and vomiting are prednisone side effects I think. My headache, neck and jaw pain are awful and fatigue is a new way of life. I have a dr's appointment on January 2 So will see what my next step is.
"My headache, neck and jaw pain are awful" - and together with the other symptoms you ascribe to pred, it suggests to me that you have reduced too far to control the inflammation of still active GCA. Nausea and vomiting are unusual effects to associate with pred but they ARE symptoms of inadequately managed GCA.
A study done in London and Southend found that GCA can still be very active after 6 months at high dose steroids, i.e. above 20mg, and can be identified by histology even though the blood markers are "in normal range".
I have been on Actemra since January 2019. It was explained to me by my rheumatologist that it would help me taper down the prednisone a little faster and keep me at the lowest possible dose minimizing flare ups. So far, so good. I am currently at 6 mg of prednisone, and my goal is to get to five and stay there. According to my doctor, I will probably be on pred for the rest of my life. Your prednisone usage makes no sense to me, but don't worry, you don't need to explain it to me, I'm not a doctor. It just is so different from what I went through. I started at 65 mg back in November of 2018 and am now just at 6 mg. My doctor was adamant about me tapering slow and steady and it seems to be working. He did not prescribe Actemra until all pre tests were done, due to side effect known to be associated with Actemra. Liver testing, colonoscopy etc. The only side effect I have is extreme tiredness about a day after my injection. No headaches, nothing. I wish you the best, and I am sorry I can't offer anything that will make you feel better, but reaching out to all these wonderful people will definitely help you.
Thanks... I’ve posted this to others on this site...just passed the 2 month date of Actemra and no pain for 3 days. I, too, am very tired the day after the injection, but it’s better than it was at the beginning of my Actemra treatment. I’m at 7.5 Prednisone...now tapering at .5 every 1-2 weeks, depending on how I feel. Will you be stopping the Actemra now (1 year mark)? Are you feeling “normal” now (whatever that is)?
Thanks for sharing...are you still on Prednisone? Do you feel unwell/extra tired the day after your Actemra injection?
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