On Actemra and 8mg Prednisone....trouble with tapering. Please help!

[GratefulBailey]

I started Actemra at the end of October and was on 10mg Prednisone. I was able to taper to 8 mg with good results - first few days of reduction was tough (dull headache, nausea, fatigue) but rallied after that. I have tried to taper to 7.5 three times now; the first time, I lasted 3 days because of a bad headache ( not nearly as bad as the original GCA headaches) that was controlled by Tylenol 1 or Tylenol 2, then went back up to 8. The second and third time, I tried the DSNS method, the same symptoms returned, but again went away after a few days on 8 mg.

I spoke to my rheumatologist this morning who said he wants me down to 7 mg in a month to assess if the Actemra is working or not since the goal of the Actemra is to get me off prednisone. I am aware of this but am so worried ....the Actemra has made a significant difference in my life in that I am functional again, my energy level is up and for the most part, I’m beginning to feel like “me” again. I am mindful of fatigue and when I overdo things because I think I’m back to “normal”, I hit a brick wall and have to remind myself to slow down!

Should I be totally symptom free at this point? My understanding is that Actemra is a prednisone sparing agent, targets the Il6 protein in the blood - not everything that contributes to GCA. I have compared this disease to a roaring fire, and the prednisone and Actemra work to extinguish this fire. In my mind, after 9 months of treatment so far, this fire is still burning - not the inferno, but perhaps at the embers stage. And with embers, you get the occasional spark that occurs...I’m sorry I’m rambling, but the conversation with my rheumatologist this morning has really upset me. I am extremely sensitive to any and all medications (have been my entire life) and have been told I metabolize medication very rapidly. My side effects with Prednisone have been “over the top” and I am very worried that my rheumatologist will up the prednisone and take me off Actemra (since it is so costly).

I also understand that the dose reduction around 7 becomes tricky....I am totally overwhelmed, worried, confused.

I will try 7.5 again tomorrow with the DSNS method and pray that it will be ok.

Thank you to anyone who is able to share some thoughts ....and thank you to everyone on this site for their daily posts. The support just from reading other people’s experiences is very helpful.

PS - a couple of grammatical errors but my iPad is being stubborn and not allowing the cursor to go back to correct!

PS2 I will also try not to project and “stay in the day”!

[PMRpro Ambassador]

I think you have summed it all up. Actemra may NOT get everyone to zero pred and at this stage you are into the realm of "returning adrenal function" - that still requires a slow reduction of the pred dose to prod the adrenal glands into full life again.

Personally I'd say the Actemra is working - but you are possibly one of the 50% or so for whom it is a dose reduction aid rather than the 100% perfection a lot of doctors seem to think.

[GratefulBailey in reply to PMRpro]

Thank you...I will keep that thought when I see my rheumatologist again in a month. His original plan was no prednisone by March (that would have been 10 mg in December to 0 at the beginning of March). I am going to remind my Rheumatologist of my sensitivity to drugs and my need to taper slowly. I don’t want to be relegated to my bed/couch again where I was daily because of the Prednisone side effects... and I believe the lower prednisone plus Actemra has helped me to regain some semblance of “normal”.

Thank you for your support and your comments.

[PMRpro Ambassador in reply to GratefulBailey]

His plan and your PMR/body's plan are very possibly not the same. You can only proceed cautiously and see what happens.

[GratefulBailey in reply to PMRpro]

Thank you again...you have expressed this so calmly and eloquently...no wonder you are a “pro”

[PMRpro Ambassador in reply to GratefulBailey]

Too much practice I fear ...

[GratefulBailey in reply to PMRpro]

I agree...

[GratefulBailey in reply to PMRpro]

I meant the “I agree” as a complement! So grateful for your input...

[Chrisellie in reply to GratefulBailey]

Wow that is way too quick a reduction of Prednisolone. There should be at least 6 months from your first injection to get to 0, assuming your body and symptoms allow. My profile shows the reduction I was put on. There was 5 months from 10 mg to 0. Hope you get this to work for you. They must do your reduction properly though.

[PMR2011 in reply to Chrisellie]

Agree Chrisellie, I took a full year and a couple months to get from 20mg to zero after the Actemra had kicked in for me. And most of that time was once Pred was below 10mg. And you may not get to zero, and there’s waking up the adrenals. Even though Actemra’s in the picture it can still be tricky.

[PMRpro Ambassador in reply to PMR2011]

I do wish the doctors who pounce on it had read the study documentation! It is obvious from that that it isn't a miracle - or at least, it is one that still takes time.

[GratefulBailey in reply to Chrisellie]

I’m going to do the DSND taper, starting again tomorrow at 7.5. I liked your comment, “assuming your body and symptoms allow” and will keep that in mind as I attempt this reduction.

Thank you so much for replying to my desperate post!

[GratefulBailey in reply to Chrisellie]

I looked at your schedule just now... a lot different from what I’ve been doing! Slow and steady will be my focus now more so than ever.

Thank you!

[SheffieldJane]

PMRPro has pulled my scattered thoughts into a coherent response as usual. I would also add that I think your Rheumatologist is being a bully and this will harm your overall health, by creating stress. Perhaps he needs some honest feedback? The money Actemra costs is not his, it is ours as taxpayers. It sounds like you have gained many benefits from it and you perhaps just need more time. You express yourself very well.

[GratefulBailey in reply to SheffieldJane]

Thank you...my husband actually expressed similar comments to me this morning - I was so upset/stressed after I got off the phone with my rheumatologist. I regretted leaving a message for him yesterday - he may be very good in his field, but I almost wonder if he has lost his sense of compassion for his patients at times like this. I don’t want to be just a statistic.

And yes, thanks for reminding me that the Actemra cost isn’t his to bear...

I will keep your thoughts in mind when I see him next month, especially where you have affirmed my feelings of knowing I have gained many benefits from Actemra and need more time!

Thank you again.

[Devoid]

Hi I am on actemera and down to 9 mg steroids dropping 1 per month since 10 mg my rheumatologist has hinted that I might never be completely off steroids but at a dose my body can tolerate. Like you the actemera has made a significant improvement but the dreaded fatigue still looms large

[GratefulBailey in reply to Devoid]

Yes...exactly! Just when you think you are in the clear, the fatigue feels like you are being hit by a baseball bat ...then I pick myself up, dust myself off and try again! It sounds as if your rheumatologist is at least acknowledging your improvement with Actemra. If I have to be on a low dose prednisone for life to keep the CGA in remission, so be it.

I just can’t take it in higher doses.

A quick question - my hair loss is significant every time I taper...and you?

[Devoid in reply to GratefulBailey]

I have lost a lot of hair but fortunately it’s more a thinning and I have got plenty, I noticed it more when I started methotrexate so not sure which drug is the cause, nails on the other hand are extremely strong which doesn’t make sense to me

[GratefulBailey in reply to Devoid]

Oh me too...thick hair to begin with, now so thin. I’m not on Methotrexate, but so much hair loss especially after each taper since I’ve been around 10 mg. I’m using Revive thickening spray, scalp treatment and hair masque (Amazon) which helps with styling, but nothing for the hair loss (so far). I’m also taking Biotin, Biosil, a B complex supplement, and getting a lot of Omega3’s from food and a supplement. Nails are also so strong and are growing like crazy. I wish I could funnel some of that growth to my head!

[Jim-CJ]

Hi GratefulBailey,

At 7.5 it is always the tough part, but you will get by it with Actemra and Dead Slow method. My wife on Actemra is down to 4 mgs of Prednisone and still has some head pain, usually the next day after her weekly Actemra injection, but goes away for the rest of the week.

Stick with It,

Jim & CJ

[GratefulBailey in reply to Jim-CJ]

Thank you so much...I feel so much better hearing this! 7.5 tomorrow with the DSNS method for sure!

[cdenoncourt]

I noticed you said Tylenol controlled the headache you got when you reduced and that you went back up to 8 mg. pred after that. Could you perhaps try staying a few more days on the Tylenol since it’s helping and perhaps get through the initial taper pain without going back up? My rheumatologist told me in the past that Tylenol did nothing for a flare and if Tylenol helps the pain it was a good way to judge whether or not the pain was from withdrawal or from a flare.

[GratefulBailey in reply to cdenoncourt]

Oh thank you! I am terrified of having a flare and was so worried that the headaches that are pretty well gone at 8 were an indication that it was indeed a flare. I’ve read a lot of articles on line that state that after a few days of high dose prednisone, the pain is pretty well gone. That wasn’t the case for me, although the headaches were nothing like the agonizing ones I originally had.

7.5 mg tomorrow and I’ll have my Tylenol close by!

Thank you again!

[PMRpro Ambassador in reply to GratefulBailey]

It is fair to say that generally if Tylenol/paracetamol deals with pain, above all headache, that it isn't very likely to be due to GCA.

[GratefulBailey in reply to PMRpro]

But what if the pain is in the “GCA area” vs the forehead or whole head ? It’s not that searing, stabbing pain, but still in that area. It does respond to Tylenol, so it’s not painful the whole day. I’m getting paranoid, and I think part of the reason is because of my rheumatologist’s expectations - that my pain should be gone by now.

[PMRpro Ambassador in reply to GratefulBailey]

The trouble with steroid withdrawal pain/discomfort is that it almost always mimics the disorder for which you are taking the pred - and usually if you go back to the previous dose it disappears, just as you would think a flare would. It has in the past been a major cause of increasing the dose - in a panic because a flare is suspected.

It is why we go on and on about SMALL steps which reduces the likelihood that you will experience it and why we suggest trying paracetamol/Tylenol. If that works it really is very unlikely to be GCA and if it fades over a few days the same applies. It is a question of learning to know YOUR body - which you can do better than any doctor can ever hope to.

[GratefulBailey in reply to PMRpro]

Thanks...wish me luck - 7.5mg today right after I have my breakfast now! (DS method)

[PMR2011 in reply to GratefulBailey]

One of the side effects of Actemra is headache. Keep well hydrated. I inject in the evening so can go to bed after some Tylenol if I get the headache and usually wake feeling fine.

[GratefulBailey in reply to PMR2011]

Yes, that’s what I started to do after a few weeks of beginning the injections. I usually take Gravol as well because of nausea. This made a significant difference for me.