Normal Sed rate, CRP, on Actemra for 2 1/2 months, trouble with Prednisone taper

[GratefulBailey]

I have read several posts emphasizing the need for a slow taper, but when I tried reducing from 8 mg prednisone to 7.5, my GCA headaches returned, along with the usual prednisone withdrawal symptoms, for me the worst being fatigue, nausea and muscle pain. I went up to 8 mg after 3 days. My rheumatologist gave me a schedule to be off prednisone by March - not going to happen! I’m going to try the slow taper following the PMR dead slow method...any suggestions or sharing of how this method worked? Thank you...so grateful for this site!

[PMRJ]

slow taper has been the solving process for me to taper. Every taper until using slow taper failed! I am now tapering from 1.0 to .5. The year 2020 will be year 5 this Jan. It has been slow and painful in many respects. I have a PRM friend who also has had good success with the slow taper.

She is not at 1.0 tapering to .5 also. No harm in trying it. It only takes 6 weeks to see if it' going to 'go' for you. PMRJ

[GratefulBailey in reply to PMRJ]

Thank you... I am extremely sensitive to all medications (prednisone the worst!) and this seems to be the only option.

[PMRpro Ambassador]

Your normal ESR and CRP are of little relevance in management of GCA with Actemra as it suppresses the production of IL-6 which contributes to the production of the proteins that raise these two markers. Symptoms are more relevant in managing the reduction of pred while on Actemra - I was told this recently by a leading rheumatologist in the PMRGCA field because someone else had asked the same question.

In the clinical trials it was clear that Actemra works very well for about half of patients, allowing them to stop pred altogether. A few are unable to tolerate it or it doesn't work at all but the rest are only able to reduce their pred dose significantly without being able to stop it altogether.

This is probably due to the fact that there are probably at least 3 different mechanisms producing the GCA inflammation and only one of those 3 responds to Actemra. If YOUR GCA happens to also involve the others there will still be some disease activity continuing.

Do try the DSNS or DL's taper - but always keep in mind that however slowly you reduce you may not succeed. If your rheumaotlogist is insistent on a fixed approach and is not willing to consider the facts I have mentioned above then you may need to discuss it in detail with them and even find a second opinion.

[GratefulBailey in reply to PMRpro]

Thank you...At my last rheumatologist’s appointment in December, I was seen by a resident before the rheumatologist came in and she mentioned that I could still have GCA symptoms despite the CRP and ESR numbers - the rheumatologist only focused on the numbers and was pleased with my progress (especially compared to 5 months ago).

I went to a Vasculitis lecture series in November (Toronto) and Dr. Peter Merkel was the keynote speaker. He focused on the need for more research of course, but also was happy with the ongoing Actemra results worldwide. I’m hoping I’ll be one of the 50% that responds to Actemra. The side effects from the prednisone are still difficult, but more manageable at the 8 mg dose.

On the plus side, I do have more energy most days and headaches (at 8 mg Pred and Actemra) are managed with extra strength Tylenol. (Last week only two days were severe and I had to bump up to Tylenol 2.) I also find walking daily and meditation (via You Tube) are essential to helping to manage my symptoms - and anxiety centred around thoughts of no recovery!

I am worried that I am focusing more on wanting to get off prednisone because of so many difficult to manage side effects vs keeping the GCA controlled - I hope I am expressing my thoughts coherently....

Thank you again so much for your reply.

[PMRpro Ambassador in reply to GratefulBailey]

Peter Merkel certainly does know his stuff - I'd enjoy a lecture by him I think. Certainly have had good discussions about PMR with him!

[PMRCanada in reply to GratefulBailey]

Darn, I missed that lecture in Nov!! I’m only about 2 hrs away and would have loved to attend.

[GratefulBailey in reply to PMRCanada]

I got the information about the presentation from the Vasculitis Canada website - I check it periodically for any information I can get!

Dr. Christian Pagnoux was another speaker; there were talks by researchers on sleep, current research being done (too technical for me!) and the use of THC/CBD for pain relief (said this was still in the early stages for concrete evidenced-based results.) There were some people in the audience who said they were using medical marijuana (THC) for sleep with great results. (There was time provided for questions after each doctor did their presentation.)

[PMRCanada in reply to GratefulBailey]

Sounds amazing. I’m one of those folks that have been using THC for sleep for years now (since I developed work-related PTSD about 7 years ago, now retired). I’ll keep an eye on the Vasculitis website. Thanks for sharing.

[SnazzyD]

From my experience I felt generally unwell and achey from about somewhere below 8 and 5mg. I kept going because I had a hunch that it was my adrenal function not working and the dose was still too high for them to wake. I went down no faster than 0.5mg per 6-8 weeks but persisted through it. However, it looks like you were diagnosed only 8 months ago and to be as low as 8mg now is quite fast (it took me over a year with no complications), so I’d be wary of forging ahead, especially if you are getting GCA niggles. I’d be wanting another opinion. I have met docs who are of the opinion that you rattle down through the Pred doses, hit a flare inevitably so they can put you on Actemra, job done. I said no thank you. The other question is your adrenal function supposed to come back without a crisis if you are on zero in 2/3 months? Actemra doesn’t save you from this tricky part. Anecdotal evidence here is that it takes way way longer than that for most.

Just a note to say Ondansetron gives me quite bad headaches and it is listed as a side effect. Nausea and general abdo pain were one of the problems at low doses until my adrenal glands woke up more.

[GratefulBailey in reply to SnazzyD]

Thank you ...your reply affirms my decision to taper very slowly. Also thanks for the reminder that the general unwell feeling and achiness would be from the prednisone withdrawal vs some other nasty illness!

When were you symptom free?

[SnazzyD in reply to GratefulBailey]

The problem is weeding out Pred withdrawal, poor adrenal function and possible GCA/PMR. The adrenal symptoms felt like an empty tank in every way that I had never felt above 8mg. I did wonder if I was getting PMR but a hunch said no. Withdrawal tended to last a week rather than the usual few days. I never had GCA symptoms other than twice when unavoidably I completely over did it. Even then I just got a vague awareness of my temple. I had almost the full house of GCA symptoms except claudication and eye problems but it was due to an inflamed sternocleidomastoid muscle. An hour with my Bowen therapist and it was gone until I got it again months later. The main GCA symptoms did not return from two hours after my first Pred apart from three weeks after that before I sorted some Pred absorption problems. I have never flared.

The point of this ramble is to say that there are no easy answers so listening to your body is most of it whilst simultaneously avoiding panic, wishful thinking, fear and impatience. There’s no pill for that.

[GratefulBailey in reply to SnazzyD]

Oh, you are so right when you say there’s no pill for that. I struggle with that thought daily, but repeat my mantra, “It is what it is” and carry on!

Can I clarify something with you - once you completed your high prednisone course of treatment, were your CGA symptoms gone? I’ve only been pain free a few days at a time. As mentioned in a previous post, the pain is mostly controlled with Tylenol. I’m just curious if you - or anyone else reading this - can solve this mystery for me.

I was on 50 mg Prednisone for 3 weeks (July 2019); I could not do the full month of high dose because of severe side effects, the worst being cardiac issues. My tapering to 8 mg has been accomplished over 5 1/2 months, not always an easy journey.

But....never totally without pain.

Thank you.

[SnazzyD in reply to GratefulBailey]

Pain where exactly and when?

For me Tylenol didn’t touch the GCA symptoms at any point and this is a common point made by others; only Pred helped. If you have GCA it is highly likely that after this amount of time it is still active. I did get muscle pain due to Pred reducing them and plenty of temporary withdrawal pain but I waited to be on an even keel before reducing again for a minimum of a week. Perhaps you are just not getting enough time to level out before the next drop?

To answer your question, my symptoms were gone as soon as I had enough Pred on day 1 (apart from the hiccup 3 weeks in) and I think this is because I reduced as I saw fit, within reason. For some it takes a bit longer but this far in I’d expect you to be ok GCA-wise if you were on enough.

[GratefulBailey in reply to SnazzyD]

Pain on bad days is on the temporal artery biopsy scars (I had 2 bc the surgeon took a piece of a vein instead of an artery....) or in the left temple. Some days it is on the back of my head and will involve the whole head if I don’t “catch” it in time.

I will stay on 8, track my symptoms, and definitely address this with my rheumatologist when I see him again in March.

Thanks for sharing!

[Nap1]

So this is what I think. I don’t know how long you have been on 8 but I think your body is telling you it is not long enough and you need to try staying a little longer and then go for reducing again. I don’t think your doctor can dictate when you get off prednisone I think your body dictates that. I’m still on 10. I have gone up and down for years same with actemra . I am about to start actemra again. I just had a knee replacement and had to stop I’m not sure where my numbers are. But until all skin is healed I am not allowed to start the shots again. Go back up to 8 mg and see what happens.

[GratefulBailey in reply to Nap1]

I had been on 10 mg for 3 months until the beginning of December; went to 9 mg for a week, then 8 for 3 weeks because of the busy Christmas time. I tried 7.5 at the beginning of January and lasted 3 days. Now at 8 again and managing, but not totally without pain.

[GratefulBailey]

I checked four of the seven symptoms of prednisone withdrawal symptoms....I guess I’ll stay at 8 for awhile....

[Chrisellie]

Hi. I too am still on Actemra. Tocilizumab . I have been off Prednisolone since end of September last year. I found the last 4 mg difficult as I wasn’t sure how much was pred reduction and how much were symptoms. I persevered and now off pred for almost 4 months. I am feeling a lot better but not 100% yet. Slow slow improvement. I think we look for speed in these things and forget how ill we have been, or should I say are. Keep up the good work though, I am sure you will get there.

[GratefulBailey in reply to Chrisellie]

Thank you so much for the encouragement! I’m back on 8mg again today and feel better.

Do you feel somewhat “off”/unwell the day after your Actemra injection? I’m better now than I was when I first started the treatment at the end of October, but still know the day after the injection is a “be good to myself”/couch day for me.

[Chrisellie in reply to GratefulBailey]

Definitely . Not I’ll ill, but very tired and sleep some through the day and evening. Usually later in day and the next day I feel “off”, and have an annoying little, occasional cough which last maybe 48 hours. Been on Actemra for almost a year and still feel like this but less tired as the months go by.

Anything else, please ask.

[GratefulBailey in reply to Chrisellie]

Not that I’m glad to hear this, but it gives me a sense of relief, knowing that it’s not just me! The pharmacist who instructed my husband and me how to do the injections suggested giving the injection around dinner time, that way “sleeping off” some of the effects and dealing with that fatigue and “off” feeling for only one day ...not that this is entirely successful, but at least it’s somewhat better. Have you been told how long you will be on Actemra?

[Chrisellie in reply to GratefulBailey]

Yes only 12 months. I hope I am in remission after that but only time will tell.

[GratefulBailey in reply to Chrisellie]

Your post - as well as the others - are giving me hope. I still have 9 months of Actemra and have to get off prednisone, so any stories of “survival “ are so appreciated.

[Lauren103 in reply to Chrisellie]

Hi

I am very encouraged to hear that you finished your taper to 0. It’s been four months; that is such good news. I take Actemra by injection once a week. I have GCA and PMR and it has been a long haul. I am currently at 5.5 mg of prednisone. At this time the PMR symptoms are more prevalent than the GCA symptoms. I am moving very slowly. Your post is very uplifting; thanks for sharing.

[PMRpro Ambassador in reply to Lauren103]

Not all patients are able to get off pred entirely - only about half are that lucky. If you have symptoms - you are at too low a dose of pred even if you are on Actemra.

[poppetpain]

Please do not be bullied by your doctor to reduce by 1mg per month. It is too much too fast. I reduced successfully over 3years by using the "dead slow and stop" method ( you'll find it somewhere on this site). It is meant to kid your body into not realizing that you've reduced the dose! I showed it to my rheumy specialist who fully agreed with my giving it a go and just insisted that I kept a diary of how it went. My polywotsit left me after roughly 2 years but it took a further 9-12 months to reduce pred slowly and not risk pmr bouncing back. I am totally pain free re pmr now for last 3years. Hope this helps and I wish you well. Big hug x

[GratefulBailey in reply to poppetpain]

Your story gives me hope...! Started the DSNS today....

[poppetpain in reply to GratefulBailey]

Just another thought. I would be in pain when I woke until my morning pred kicked in abetween 10 and 11am ☹️. So I started taking my pred at 2am after reading a post here that the inflammation rears its head at approx 4am. I had no pain when I woke! Eventually though I took them just before bed with a yoghurt and I was still pain free on waking next morning. x

[GratefulBailey in reply to poppetpain]

I’ve been taking Tylenol for Arthritis at bedtime the past 3 days and noticing a bit of a difference; prednisone at 7:30 in the morning.

[PMRpro Ambassador in reply to GratefulBailey]

Might be better the other way round - you never know.

[GratefulBailey in reply to PMRpro]

Worth a try...