Tapering symptoms

[Graciejack4]

Hi, after GCA diagnosis June 2021 I have been gradually tapering my prednisolone dose but each time I get to 20mg I get right sided head pain and jaw pain and cheek numbness. I started Tocilizumab 10 weeks ago but not sure it is working and due to start Methotrexate this week in addition. My rheumatologist always tells me to stick it out and that the symptoms will improve but part of me always worries and I usually end up going back up again to the previous dose (25mg), I have had to do this on 3 occasions now, has anyone had a similar experience?

[PMRpro Ambassador]

To be down to 20mg after 6 months is good going - and you obviously tried it in well under 6 months. They are in such a hurry. And I have to say - you wouldn't persuade me to take both TCZ and MTX at present. One or the other would be more than enough. They didn't use both in the clinical trials for GCA - so why try it now?

[Graciejack4 in reply to PMRpro]

Thank you for your reply, my rheumatologist is so keen for me to reduce my steroids but my case is proving difficult for him he admitted I think all is other GCA patients have been text book! One size doesn’t fit all! I have taken it slower myself reducing in increments of 2.5mg which he didn’t really agree with. I am reluctant to start the Methotrexate and feel like he is throwing everything at me currently without the results of tests I am still waiting to have. He wants to check if my disease has spread to my larger vessels.

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

If he thinks all GCA patients are text book, then he hasn’t met those on this forum!

As PMRpro says to be at 20mg in such a short time, with or without TCZ is fast, and the fact that you keep flaring at that level should tell him it- “it’s too low!”

[Graciejack4 in reply to DorsetLady]

Thank you for your reply, this disease puts a big responsibility on us all I have found it really hard and I come from a medical background (pharmacy) but knew nothing about this condition until my sudden diagnosis after losing sight in my left eye. I feel I am managing it all on my own and don’t have a lot of confidence in the rheumatologist unfortunately. I am happy to take the slow taper approach if it helps to the flares. I appreciate the feedback, many thanks

[PMRpro Ambassador in reply to Graciejack4]

If you have already lost vision in one eye he is being a bit cavalier with the speed of the reduction. Protection of sight is more important than anything else.

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

Similar to me then, no knowledge, lost sight ….

Have a look at my profile and the link at the end, might help you to know you are not alone -

healthunlocked.com/user/Dor...

[Graciejack4 in reply to DorsetLady]

😊thank you so much for taking the time to reply, yes my initial situation is similar to yours, I am adjusting well to one eye and am driving now too. Did you have any other drug treatment other than steroids?

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

No I didn’t, TCZ had not been authorised for GCA patients during my time…in fact think it was only trialed the year after I went into remission.

Apart from 2 visits to Rheumy and the initial diagnosis & treatment from Ophthalmologist, my GCA was managed by GPs.

Once on the Pred path I never had any issues with flares or setbacks, so adding in another drug was never a consideration,

[Skysey in reply to Graciejack4]

I agree with the other more knowledgeable members on this forum. Sounds like the taper has been too fast. I thought mine was but yours was very fast! I started on a high dose two years ago and I am now on 2mgs. I definitely wouldn’t want to take methotrexate with the other meds. I was on methotrexate but had to come off it after a few months as it was adversely affecting my liver. Some people are fine on it though. It’s all individual. I am on pred and leflumonide but wouldn’t want to add another unless there was a good and clear reason. Good luck and keep us updated.

[Graciejack4 in reply to Skysey]

Thank you for your reply, as I’m awaiting more tests I think I’m not going to start the Methotrexate, I feel the Tocilizumab hasn’t had time to work properly yet so want to give that more time. In the meantime I will adjust my pred dose up again if symptoms persist.

[Temoral in reply to Graciejack4]

I feel the same...that the Rheumy is driving the reduction regime, and I have to keep gently steering him to appreciate we are all different...without upsetting him! Difficult enough to balance our health...then having to manage the 'experts' . Great forum here for support 😉

[PMRpro Ambassador in reply to Graciejack4]

He's probably a bit late doing those tests if you are already on TCZ! If they read the literature they would discover that YOU are probably text book - or the text books are far too optimistic! You fit with this approach:

rcpe.ac.uk/journal/issue/jo...

which takes 5 months basic to get to 20mg. There is even one approach that gives a 3-day pulse therapy of 1000mg/day as infusions first - and by using all that extra pred, the following reductions are easier and in the long term the patients have a lower load of pred.

Counter-intuitive but true

[Graciejack4 in reply to PMRpro]

Thank you I will read the article, many thanks

[Blearyeyed]

I would try to be brave and request to start TCZ and give it a chance before going on MTX as well. It can be really hard for your body to cope with the medical changes of having a number of new drugs at once , and especially such strong ones.

It would also be hard for to figure out whether you are suffering new symptoms or which drug might be giving you side effects if you get any and then which would need to be altered.

Like DL , as a past GCA sufferer , I took longer than 6 months to reduce below 25 mg and if I did try to push the reduction that early on I got the same rebound symptoms as you.

As you have already lost some sight in one eye it is not worth taking additional risks and pushing to follow a timetable that doesn't seem to fit your needs.

I would write down everything you want to ask and your objections and arrange a call if this rheumatologist to discuss creating a plan that you are comfortable with.

You and your medical care providers need to work as a team with conditions like this and your worries and wishes are not unreasonable.

If you can't get them to change their approach , or get them to consider your needs and wishes , I think it would be a good time to politely but firmly request that you can get a second opinion from another specialist with GCA as a specialism before you start all the new drugs at once.

Sometimes when you ask for a second opinion the specialist , although reluctant , will often decide to consider your point of view rather than having their decisions examined by another professional.

At other times, you can often get swapped to the books of another doctor that you are more comfortable with and it makes your treatment path a lot less stressful.

It takes being brave , and it is not fair that your doctors put you under these stresses but it can make your recovery easier to bear when it has been sorted out.

Take care and let us know how you get on.

[Graciejack4 in reply to Blearyeyed]

Thank you for your reply, I have been on the Tocilizumab for 10weeks but he wants me to take methotrexate now too but I’m not happy to do this at this time especially has they both suppress them immune system. This site has been a god send to me I’m really grateful for the support.

[Blearyeyed in reply to Graciejack4]

Oh , right , I still wouldn't want to add in MTX for the reasons you know yourself and because he hasn't really given you enough time to start responding to the tocilizumab.

Many people don't get response on biologic drugs for 3-4 months from beginning them , and most people have had GCA and been on steroids for a much longer time , or are at a lower dose and have their symptoms in more control , before they are offered a chance to try speeding up their steroid reduction with tocilizumab.

I hope you will be able to get the resolution you prefer , it is terrible to hear when a forum member us being bullied in this way.

[PuttyPenguin]

Oh yes! I was rushed from 60mg to 10 mg in 6 months...seven months later, I'm on 12mg. I have experienced all the numbness, pain and tingling every time I reach 10mg. I'm currently on my third flare-up and have booked an appointment with a private rheumatologist as I'm getting a little fed up. I do 'stick it out' for about 2 - 4 weeks depending on the severity but having had double vision initially so I never want to go back to that again.

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Well I’m going to say you shouldn’t- ”stick it out” - you may be doing more harm to yourself.

Hopefully another Rheumy will be more sensible about reducing. It never fails to amaze me why after a few attempts some doctors don’t get the message that the taper’s too fast and not working,

Stubbornness or not liking to admitting they are wrong probably - but that’s no help to you as their patient.

[PuttyPenguin in reply to DorsetLady]

Thank you Dorset lady. I have yet to speak to the same rheumatologist twice. They have breezed through their calls and just told me to keep reducing 1mg every month. They seemed to have been aiming to get me off Pred within 16 months. According to all that I've read, the average person with GCA takes about 2 years to come off Pred and the average person with PMR takes around 3 years to taper off Pred. I feel that the rheumatologists treat these diseases as not being so important. There are about 80 different autoimmune diseases which require different medications and often effect a patient for life rather than - within relative terms - a smaller hiccup with the autoimmune system. This, I believe, is the reason we are treated with less concern.

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Well here’s one person with GCA who took longer than 2 years - but then never been average! 4 years on Pred (as are many on here) plus 18 months before undiagnosed.

Problem is many doctors read the same as you have - and although 2/3 years may be average - there are a lot of patients who aren’t average - this forum is testament to that.

They also seem to think if you aren’t are average then obviously it’s your fault - no it’s not!

To them the illnesses may not be important, but they certainly are to the patient - and GCA can be pretty devastating. Believe me I know, but then mine was diagnosed and initially treated by an ophthalmologist (very aware of sight issues) and then by GPs- so maybe I was lucky in that.

As said previously, hope you get better results privately.

[PuttyPenguin in reply to DorsetLady]

Thanks! I was highlighting 'average' as a contrast to how I've been treated - all done and dusted within 16 months! No-way! The fight continues....

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Yes but the fight takes it’s toll as well!

[Kafkaontheshore]

Hi Graciejack4. Just to say I was hanging on the hope for Tox to kick in straight away and sort me out. My main symptom was extreme fatigue but of course worried about what was happening on the inside! I have large vessel vasculitis and was stuck at 20mg Pred. I was given Methotrexate first but it didn’t seem to help (am still on it). It took about five months on Tocilizumab before I could reduce Pred. That was last August. Am now on 3mg Pred reducing by 0.5 mg every four weeks. I have been feeling much better and more my old self. Not there 100% but am happy with progress. Good luck on your unwelcome journey 😀

[Graciejack4 in reply to Kafkaontheshore]

That’s really interesting, I am now being investigated for large vessel disease too but I feel I need to give the Tocilizumab inj more time to work. Have you been ok having Tocilizumab and methotrexate together? I am really reluctant to start the Methotrexate at this time😳it all feels very rushed. I am looking at getting a second opinion.

[Kafkaontheshore in reply to Graciejack4]

Hi. It’s always difficult to know the effect of one med v the other isn’t it. Certainly methotrexate didn’t help me at the time on its own. I had already been on low dose Pred three years when LVV came along so that may have played a part. I pushed for Tocilizumab as I was feeling so ill. I guess I have tolerated the meds quite well. It has been better getting the Pred dose down. That gave me hypertension. I think if it is LVV the all lines of attack should be considered in my opinion. I read a lot about it all, you may not, but I just wanted to avoid serious health problems that you can have with LVV. My 12 months on Tocilizumab are up end of Feb so will have another PET-CT scan. Fingers crossed artery inflammation gone!!

Second opinion good idea. My nephew is a prof of rheumatology so that was very helpful. Good luck

[Graciejack4 in reply to Kafkaontheshore]

Yes as I am being investigated now for LVV I might have to consider the dual treatment, thank you

[Sharitone in reply to Kafkaontheshore]

I am also on pred, mtx and tcz with extreme fatigue. Tcz only 5 weeks, and no obvious improvement, so your story is hugely encouraging. Thank you!

[Kafkaontheshore in reply to Sharitone]

Hi Sharitone. Patience is one of the key words for us on our ‘journey’ I think! Good wishes 😀👍

[Kafkaontheshore]

Good luck. If you want to pick my brains at all going forward let me know. We are all different but it has been so helpful for me hearing what other people have done etc