On prednisone for 2 years and trying to get off. Down to 10 mg and having the headaches, stiff neck and jaw pain. Am VERY willing to put up with this in order to get off Pred but originally went permanently blind in left eye frim GCA, and don't want to have the same result with right eye. Rheumatologist is trying to get Actemera for me and wants me to start on Methotrexate injections. Tried oral Methotrexate and tore up GI and lost hair. I am trying not to be vain but my blind eye makes me look like Mad Eye Moody, I have pumpkin face, and weight gain and I really hate to also be bald! Rheumatologist wants me to reduce Pred 1 mg per week. Agggh... what to do???!
Is it safe to reduce Pred if having symptoms - PMRGCAuk
Is it safe to reduce Pred if having symptoms
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nancyahayden
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Reduce by 1mg per week and do what? Until Actemra is approved for you, you need treatment. You can't just reduce and not know what is going to replace pred and protect you from further damage.
How kind of you to take time to answer. That is what I thought... I REALLY want to get off this dang Pred but am afraid of the Methotrexate and still waiting to see if I can get Actemera
YOU WROTE "having the headaches, stiff neck and jaw pain."
NO, NO AND NO REDUCTION AT ALL.
YOUR RHEUMATOLOGST SHOULD BE PUTTING YOUR PRED UP RIGHT NOW TO SAVE THAT OTHER EYE.
SHOUT AND YELL RIGHT NOW.
IF S/HE WON'T DO IT IGNORE AND GO TO YOUR ER NOW.
Thank you for taking time to respond. I so badly want to get off the Pred but hate the thoughts of going bald with Methotrexate.. obviously better than going blind but...
If you go bald, you can always buy a wig…If you go blind…no easy option!
Very true... I am such a freak now, I hate to add baldness but if I must I must
You don’t go completely bald -but do ask for folic acid -that helps
I am not talking about Methotextrate I am telling you - you need to up the dose of Pred now to get the GCA under control.
Dorset Lady has said the same.
Also so this might help you - I will send you the whole list is on here somewhere I just cannot find it.
Information and Tips for people with PMR and/or GCA from Professor Bhaskar Dasgupta who is a world leader in research on both PMR & GCA.
10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect.
Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR. We are searching for resources to conduct high quality trials with leflunomide. Such a trial in PMR is running in Netherlands.
Thank you so much for all your help. I am trying very hard to get the leflunomide.. I was able to get a couple of months worth about 6 mo ago and it was helping, but then it quit coming. Thanking my retina specialist helped me get it then. I'm def going to keep trying to get it!
YOU CANNOT WAIT TO GET Leflunomide, YOU NEED TO TAKE ACTION TODAY.
The fact that you have not been having Leflunomide for a 6 months is probably why your GCA has come back.
I guess I will have to find another rheumatologist somewhere... thankfully my current one has prescribed enough Pred for a reduction in dosage for a month, so I will get busy and try my best to find someone else who can see me rather quickly
in reply to nancyahayden
We all understand how you’re feeling but you MUST increase the Pred. By at least 25 mg. Only reduce by 0.5mg monthly. Our sight is precious. I’ve had GCA too so know the symptoms xxxx
DorsetLadyPMRGCAuk volunteer
“Down to 10 mg and having the headaches, stiff neck and jaw pain.”….
In that case, definitely no reduction, in fact if anything you should be increasing Pred to get rid of those symptoms.
Does your Rheumy know you have these symptoms? If not, he needs to… and he should be suggesting the same thing - more Pred not less!
You have already lost sight in one eye (been there, done it, got the T shirt) do nothing and there’s a possibility the other goes the same way.
Sorry to be brutal -but immediate action required.
Thank you for helping. Yes she knows I have the symptoms. To be honest she nearly had me in tears chastising me for not "making" the drug company give me Actemera. How do I " make" them do anything? I've called and called and I'm told they will send it, but so far nothing arrives. She insists I MUST get off the Pred ( and I REALLY want to) so tells me to decrease 1mg per week but doesn't help with an alternative? I just don't know what in the world to do??
In this instance ignore her -and get a Rheumy who understands GCA properly -not easy I know, but for your sake you need a more knowledgeable doctor.
I think I should too! My problem is, I live in a small town in the US and there are only 2 rheumatologists. The other one doesn't take insurance and, unfortunately, I can't afford to pay out of pocket. I am considering looking at other cities, at this point. I don't mind traveling at all but only wonder if I need a doctor that is close for emergencies, prescriptions and admission to hospital if ever necessary? I'm sure you don't know about all those things in the US..I'm just thinking out loud
Well to be honest, I think you need someone who better understands GCA- and all it’s implications.
You’re right, I don’t understand all the nuances of US medical (some I do), but hopefully fellow Americans will be along to offer support/advice.
Thank you very much.. your kindness is much appreciated!
Call your insurance company to find doctors that are covered by your plan. Head for a hospital that's attached to your state university. Go to the ER if you have to with your GCA symptoms. Is Actemra on your insurance company's formulary for GCA?
You may have to drive or travel, stay in Motel 6 or similar. But it's worth it.
Fortunately there are good possibilities an hour and half away that my insurance covers. It was not going to cover Actemera but my dear ophthalmologist advocated for me and they agreed. However, the co pay was still $1,000 US a week and I just can't afford that. The good news is Genentec is going to provide it for me free of charge! THANK YOU GENENTEC!
Why MUST you get off the pred? It is the one thing standing between you and total loss of vision - does she not understand that? If she doesn't - how on earth she got her qualifications and licence to practise as a rheumatologist is a mystery to me.
And if she WERE to refuse to prescribe enough pred to manage your symptoms until the company delivers on the Actemra then I would point out to her she is opening herself up to a medical negligence situation. Losing the sight in one eye isn't the end of the world - causing your patient to end up totally blind is pretty close. Something SHE won;t have to live with - but you could. And refusing to provide pred until you are sure your adrenal function is back to function is also putting you at risk of a potential adrenal insufficiency episode - which can be life-threatening if not recognised immediately.
I fought my rheumy by telling her I could sue for lack of pred just as easily as I could sue her for pred side effects.
She caved.
You'd hope!
Such a shame you have to get so tough to have results!
This is New York. Can't get a newspaper or a cup of coffee, much less a seat on the subway, without being tough.
It's also why every time this city is counted down and out, we come roaring back.
Thank you for taking time to respond. I so badly want to get off the Pred but hate the thoughts of going bald with Methotrexate.. obviously better than going blind but...
Being in my fifth year of GCA and having had PMR for 6 years before that, I can understand you wanting to get off the Pred. However, as others have said that would not be a good idea. There are many resources on here to “manage” the side effects of Pred including the weight gain, high glucose and bone health. I have been on Actemra for 3 years and it has been effective for me, however it took 3-4 months in to see the benefit and another year to completely get off Pred. Which does not always happen with Actemra as it only works on one aspect of the inflammatory response and some folks need to stay on lower doses of Pred.
If your Rheumie has prescribed it and insurance has approved, you might contact a specialty pharmacy to advocate getting the drug. Many hospitals have one. They provide very good service and can be a good distance away as they’ll mail the meds to you.
Also agree with others, your rheumie needs educating! Can you teleconsult with another?
Oh bless you! I am very sure that you look nothing like that. I do know the mood where the ravaged body feels very ugly, but it’s just that - a mood.I would not take any risks at all with Prednisalone because of your precious remaining sight. It does sound as though you are being undertreated with Pred. I hope that Tocilizumab provides the solution for you. In the meantime ensure that you are adequately treated with Pred. Do not leave yourself vulnerable.
You are so very kind.. thank you for understanding. I don't know if she will continue to prescribe the Pred at the dosage I need, but we shall see. I really hope to get off of it but not at the expense of my sight, obviously
Oh my goodness. PLEASE don't reduce the pred as that could be the only thing preventing you from potentially losing the sight in your other eye.
Your symptoms are not simply pains in your jaw, neck and head, they're there as a warning to tell you that you have increasing inflammation of the blood vessels to those specific areas and that's causing a reduced blood supply. As I learnt in a talk attended by Prof Dasgupta yesterday, this will obviously cause increasing damage if you're not taking enough pred to reduce that inflammation and there's even the possibility that this in turn could lead to a stroke!
We're all "...trying to get off down" from higher doses of pred but you can't simply keep tapering down and think that putting up with the consequences (pain/discomfort) will be ok. You're putting your eyesight and even maybe your life at risk.
There's lots of information in FAQ'S about how to ease and minimise the side effects of steroids but it does mean we have to put some effort in ourselves.
We've all had times when steroid use has felt all consuming and abhorrent but there's no alternative so it's really important to educate yourself as much as possible about the medication & what you can do to manage its side effects.
Thank you very much for your concern, and I totally agree. But, I can't get the Pred without a prescription. She renewed my prescription for the amount needed to reduce 1 mg a week but no more? I thought 1 mg a week was too fast regardless and with having symptoms it really worries me. I would rather put up with the symptoms than increase Pred a lot, but as you have said, I don't want to lose my one good eye or possibly my life.
That makes it so challenging for you and must be a real worry.
I'm so sorry there's not more any of us can do to actually help you reach the appropriate outcome. We're all in agreement as to what probably needs to happen but if your rheumatologist thinks differently then that's a concern.
You've had good advice from others here who are knowledgeable and well informed and all you can do is use that knowledge to try your best to resolve things.
I do wish you the best of luck though.
Go to your PCP and enlist their help. And as I said - tell this rheumatologist that you will sue her if you lose your sight because of HER inadequate management of your GCA. If she doesn't know how to do it - she must seek advice from someone who does.
okay nancyahayden. Let me be blunt. Hair loss and weight gain are VANITY. Sight loss is INSANITY. If you go blind it won't matter what you look like because you won't see it. Please take the advice offered. Increase your pred. to a level where you don't have symptoms. Beg, borrow, buy enough pred. to keep this going. Make sure your Rheumatologist understands the legal implications of medical ignorance and malpractice. Medicate yourself and worry about how to deal with pred. side effects later. We all want to be off it but need it.
Thank you for your concern and I couldn't agree more. I WANT and am TRYING to get the Prednisone... it is the Methotrexate I'm dragging my heels on. My Rheumatologist wants me to take the Methotrexate but to reduce my Prednisone 1mg every week, even though I am having symptoms. I don't know how I can get the Pred without her giving me a prescription for it? I had someone suggest I ask my retina specialist for the script, while I am finding a new rheumatologist. I didn't even think about that... duh!
Okay. First, the methotrexate is only to help you reduce. Forget it and tell her so. She is clearly not qualified to advise you to reduce if your sight is at risk. If she doesn't prescribe an increase and sufficient pred. just threaten legal action. I refused methotrexate and am trying to reduce slowly just on pred. I'm at 25mg and I flared at 22.5mg twice. I have GCA and PMR. You could be part of the problem by your insistence to get off pred. and they may think they are helping you. Until you suppress the inflammation and then get symptom free or a vast relief you shouldn't reduce. Please take enough of what you currently have and insist on more until that condition is reached. I don't wish to be rude, but worrying about your hair is stupid if you go blind. What were you thinking about? Please up to the dose you felt was having an effect or even above for a short while and then assess your state. Others here can advise on the dose but you must get in touch with your GP and tell them how it is.
How about asking your GP for a Pred script ? In Australia we get our scripts from both specialists and GPs who take care of the rest of our body illnesses. Good luck.
Well said Cycli! I cannot believe the appalling ‘ttreatment’ this rheumatologist is providing for her poor patient!
It is truly shocking. Never seen a thread with so much solid agreement. Do hope nancy can resolve it soon.
Would consider getting the prescription from your PCP then. That is simply malpractice! There are some excellent tapering plans on this site that are much more reasonable and all of them have the rule of thumb if you have symptoms don’t taper. Many of us have learned that we need to arm ourselves with as much knowledge as possible about our disease so we can advocate for ourselves with medical folks who aren’t well versed in them. Yes, it’s more work for us to “manage” our disease when faced with medical ignorance, but safer and better outcomes when we do.
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Everybody wants to get off pred - but there is almost no adverse effect of pred compared to the ultimate adverse effect of GCA of which you are already aware. If you reduce the pred further you run the risk of the obviously still active GCA resurging further and causing worse inflammation - which puts you back in the same ballpark you were in when you lost your sight, If you are willing to risk that, then reduce further despite symptoms. But you are playing with fire. In your position nothing would induce me to reduce pred further until you are on TCZ, preferably already for a month or more. It doesn't work instantly in the way pred seems to at high dose. In the meantime you need enough pred to get those symptoms under control.
Prog Dasgupta, probably the top opinion on GCA in the UK for the last 15 years and a founder of the charity, says he doesn't consider that MTX has a role to play in management of GCA. It is known that tocilizumab/Actemra does facilitate a reduction in dose, but only half get off pred altogether. The other half get to a much lower dose and faster than without TCZ but 8-10mg is commonly required ongoing.
Going bald with MTX or getting fat with pred bears no comparison with being totally and irreversibly blind. There are wigs, weight loss approaches that work even with pred - but no replacement for your eyes and optic nerve. When it's gone - it is gone.
I think you must somehow get more pred for the time being. Sorry none of us is in a position to be able to help you with that. A lot of the pred side effects can be managed. For example cutting out all the "white" carbs from your diet (sorry, bread, sweets, that sort of thing). And remember always that for all its downsides pred is saving your eyesight. Don't let your doctor bully you into a dangerous situation. Is there anyone you can bring with you to an appointment? The mere presence of another individual can often help elicit a kinder response (there's a witness!). Your doctor may be afraid of pred, but she should be much more afraid of the potential for one of her patients losing eyesight if denied the amount of pred required.
Is there a hospital or clinic or any other source of, possibly more expert in treating GCA, medical care available near you?
Hi nancyahayden 😊
Sorry I’ve only just caught up with your post but I have to say I agree with what everyone has said. You are obviously in a very difficult situation with your rheumatologist but the answer to your question is simply, no, it’s not safe to reduce pred while you still have GCA symptoms!!!
I do hope you can resolve this by finding another doctor (via the ER, or your retina specialist?) or by confronting the rheumatologist with the issues (preferably have someone with you).
Take care of yourself. I hope to read better news from you soon 🤞xx
Dear Nancy, I understand you feeling horrible about yourself, the most important thing is to get your GCA under control and you need more Pred for that as a matter of emergency . Once you’re on a higher dose again you’ll hopefully be able to get the Actemra and slowly reduce it down. The weight drops off once you cut out carbs . Your hair will grow back beautifully and you’ll find some cool tinted glasses, you do not want to end up blind . In the meantime I’d go to the ER for more Pred and find a rheumatologist out of town. They can’t force you to take MTX, but you DO , need more Pred urgently.
Take care and please act today .
I would definitely NOT be reducing.Increase if anything a bit until the pain is under control.I have usually increased back to where I had no pain .Look up the reducing protocol on this site.This drug is very hard to get off and we must listen to our bodies and go slow.You will get there eventually. 😀
I live in the US. Only medication options for PMR and GCA in which I have both. Only effective medicine in US is predisone. I totally understand you wanting to get down on the prednisone but if you are having these symptoms of GCA you need your dose increased. You cannot lose your sight. I had a flare up last summer of GCA and was down to 5 mg. I was increased to 50 mg and yes I had buffalo back, moon face and weight gain. I have tapered very slowly I am back down to 5 mg as of last week. I am also slowly losing the extra weight with watching carbs and exercise. Please find a new rheumatologist.
Actemra is much more easily available for GCA in the USA and it works - BUT it must be preceded with a suitable dose of pred.
Your input and explanations have been so valuable to so many. I was diagnosed early April 2022 with GCA having severe , multiple symptoms everywhere and shortly thereafter with PMR. Immediately started on 60mg Prednisone by neuro opthamologist and he's been closely following me and carefully reducing Pred.. Now at 30 mg Pred., 7-1-2022.Rheumatologist also now engaged for the long haul and just started me with Actemra monthly infusion. Astonishingly, he said to start a Pred. taper of 10 mg the very next day bringing me down to 20mg and then wants another 10mg reduction to 10 mg in a week with another 10mg reduction to 0 mg the next week. I have never heard of such and AM NOT doing that and am scheduling a second opinion. Perhaps the Actemra allows such a protocol but it seems to contradict all . Any thoughts or resources to better understand Actemra protocol for Prednisone tapering?
Regards,
birddogger
OH MY GOODNESS! THAT SOUNDS ABSOLUTELY INSANE TO ME! I must say, I am def no expert, but from everything I've read, it takes a couple of months for Actemera to have an effect; even the website for Actemera states that fact. If it isn't working yet, how can you reduce Pred so drastically? I think you are very wise to get a second opinion. Wishing you the best of luck
My rheumy takes the view that Actemra needs up to 2 months to start to work fully - and he was involved in clinical trials both for GCA and also for PMR more recently.
In the clinical trial they DID reduce 10mg per week from the start - but that was starting at 60mg pred at the same time as the tocilizumab/Actemra:
nejm.org/doi/suppl/10.1056/...
From 30mg they did not reduce at 10mg per week - it was at 5mg per week to 20mg and then the tapers diverged, slowing considerably for the 52 week taper. They can be seen on p6 of the link I gave you.
That means that those patients had had a few weeks of Actemra by the time they got to your dose. The concept of starting Actemra and assuming it is working within a few days seems crazy to me.
I have to say - some of the things I have heard that rheumies have said about using Actemra have made my hair stand on end! They do not appear to have gathered that ESR and CRP are no long useful to assess disease activity - the autoimmune disorder continues in the background but it is no longer able to create the inflammatory substance. However - GCA is caused by up to 3 different mechanisms and the Actemra only works for one of them. Half of patients require ongoing pred to deal with the inflammation the other 2 (or more) cause. Efficacy of TCZ appears to increase over time - and while it MAY start to be effective in 2 weeks, that is unlikely to be full efficacy.
It is difficult to be clear from this
academic.oup.com/rheumap/ar...
but the suggestion is that the pred taper was not started until the symptoms were stable on the combination of pred and tocilizumab and it was then initiated after an assessment by the doctor.
WISH I HAD YOUR RHEUMY
the more stories you hear the more you realise you have to educate yourself and then advocate for yourself. There are too many qualified medics who have a vanity for their knowledge which borders on dangerous when they continue to spout such nonsense.
Hi NancyWell everyone below I see have given their excellent opinions - that you MUST have a sufficient dose of Prednisone or risk eyesight loss. Long story short my mother in the 1970s lost her eyesight almost completely with then undiagnosed GCA - today this should not happen and any doctor who doesn't understand that the dosage is vital is to put it bluntly a 'drip' - and a quite clearly a dangerous one !! Don't be afraid to assert yourself and your concerns as some have also said here it is you that would suffer the direct consequences of losing your sight !! Hope you can promptly get the appropriate treatment you well deserve !
Best wishes
Rimmy
SOME GOOD NEWS! I was able to reach Genentec and they will have Actemera on my doorstep July 14!!! Hooray! And I am in the process of getting a referral for a new rheumatologist! Thank you so very much for encouraging me to move forward! I appreciate each of you very much!!!
Brilliant nancy 😊Keep up the good work!!! 🎉xx
Good news -fingers crossed things go more smoothly for you in future.
But don't continue reducing until the Actemra starts working - really needs a few weeks for safety. But thank goodness for both things!
Thank you... I was thinking that was the case. I am going to stay where I am to give the Actemera time to help!
if where you are is an increased dose of pred. the reduced dose was clearly insufficient. Have you now got more pred.? well done on rheumy and actemra.
Thank you for your concern... I have the script she gave me for a reduced dose for a month... I will double up on it till I can get the new rheumatologist or get my retina specialist prescribe it
That sounds bang on Nancy. Well done and now advocate for yourself with knowledge and power. You have the support and some on here really know their stuff with sufficient expertise and experience to challenge entrenched bias of ill informed medics. Stay on increased dose until you notice the improvement in reduced symptoms.
Thank you!
Hello Nancy, I just saw your post and am really at a loss as to what to say....there is nothing to add to all the good advice you have received. I'm in the states and have been on Pred and Actemra since 2019. I am now at 8 mg and reduce only one mg every six weeks BUT having lost one eye, I would be willing to take it until the day I die....if I keep my other eye.
It goes without saying again that your rheumy is a detriment to your health. YOU however are responsible for your choices and setting your priorities. I put on 100 pounds, my hair has gone from thin, to kinky to wavy, my body is covered with prednisone purpura,....is that preferable? NO, but for me, it beats blindness.
I am a very positive, customarily simply supportive person...but your obsession with getting off pred while you have the symptoms you cited...baffles me. I wish you the best in whatever you choose. I hope you choose sight.
I apologize, I wasn't very clear about wanting to get off Pred. I tried to state, I want off Pred because my rheumatologist seems to think I don't care if I ever get off of it, and I just wanted to make certain, everyone knew that is NOT the case. I WANT to have the Pred I need... it is my rheumatologist that is insisting a reduce at such a fast rate and won't prescribe any more than what she suggests. Of course, I want to reduce and or get off of the drug if and when I can do so safely, but I worry her suggestions are not safe. I do prefer to not start Methotrexate IF possible to do without it. I have asked my rheumatologist if I could keep just a few extra Zored on hand just for emergency use if necessary. She refuses and only writes a script to the very day I need it and now is insisting I reduce it my 1 mg every WEEK in spite of returning symptoms. I am afraid that is not wise and I WANT the Pred but can't get it if she won't write the script I am currently looking for a new rheumatologist. Thsnk you again for your concern
I apologize, I did not understand. Stick to your guns wherever you can get support and the pred you need. You are on the right road armed with the knowledge that will best serve you! I hope you find another Dr. soon. The best of luck and keep us posted....people here really care.
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