Recovered from Flare, tapering resumes...

[Marie1479]

Hi Everyone,

School is back in session and I am back to working full time. I am so grateful to have had the summer off to recuperate. Unfortunately as you all know from my last post I suffered a flare due to a stress related incident in July. I was down to 4MG (with Actemra). I increased to 5MG but still felt awful (Flu-y and shoulder pain). My bloodwork came back with low Complement C3 & C4 levels possibly indicating Lupus but inflammation markers were normal. I did notice my finger joints were swollen and stiff but what was odd is I showed no other symptoms. I requested my dr. to run the bloodwork again and if the same result I told her I wanted to rule out Actemra first before going on Plaquenil. Turns out I don't have Lupus. Actemra causes low C3 &C4 levels mimicking Lupus and some of the disease's symptoms. My dr said it is perfectly safe to have these low levels and can continue with Actemra 1x weekly and start tapering again. I told her I wanted to taper a bit differently and slower than she recommended (PMRPro was right, my taper even on Actemra was too fast). I suggested 5MG of RAYOS (time released Prednisone) taken at 10pm, which allows me to get out of bed pain free at the crack of dawn and then at 5:30am 2MG of Prednisone to get me through the day. This has worked incredibly well. I can actually make it through the day and then some. This past Friday, I started my taper as I had my Actemra injection that morning. MY plan is to reduce the "day" Prednisone by 1/2 MG per week or then some only if I am well until I get to 5MG RAYOS. RAYOS can not be split and does not come in 1/2 doses so once I get to 5MG I will taper very slowly or split the dose between the 2 meds and listen to my body.

What I have learned:

Listen to your body

You know your body the best, not anyone else

Say "no" (I really am good at that now)

STRESS has to be avoided at all cost. If you feel it coming on, breath deeply and "try" to remove yourself from whatever is stressing you out.

Epson salt baths (2 cups) with Spike Lavender oil (5-10 drops depending on your tub size)

Walking & extremely gentle yoga have been essential to me. All other exercises hurt or make me flare right now.

LOW CARB eating! This will keep your sugar & cholesterol in check. You will also drop weight. I allow myself a bit of carbs in am. Lunch & dinner are carb & sugar free

Hire a housekeeper, if you can't afford one leave it be or do a little at a time! The consequences are not worth it.

When you feel like crap, order in

Your hair does come back (at least it did for me around 6MG)

Read Mark B's posts, they will either confuse you (if you are American) or make you belly laugh! Thank you Mark

Listen to PMRPro, she is my all knowing goddess!

~Marie

[SheffieldJane]

Excellent advice Maria. Why did they decide to give you Actemera and would you recommend this drug to others? Thanks.

[Marie1479 in reply to SheffieldJane]

I couldn't get below 12MG's. I was SOOOO sick. Flu-y, horribly nauseous, blurry vision, ect. I didn't realize how sick I was until I started Actemra. Actemra has enabled me to reduce all the way down to 4MG in 3 months but as you read I had a flare and had to go back to 7MG. I am now at 6 1/2MG and feel "almost" normal. Dec will be my 1 year anniversary on steroids. I think PMR started though 6 months prior.

[SheffieldJane in reply to Marie1479]

Thank you!

[Klah in reply to Marie1479]

Interesting thing for me with the Actemra is that I have flared a couple of times over the last few months, but remarkably was able to recover in one day!!...that is the magic of Actemra. My flares seem to always be caused by too much activity and/or stress. When I flared on just prednisone it would take me 1 or 2 weeks to recover!

[Klah]

So appreciate all the information! I am not surprised that you flared after the stressful airport fiasco in July! I don't know if my Complement levels have ever been tested...but I thought that these levels were low with any auto-immune disease...? Glad you figured that out tho...and that you don't have Lupus. I just had my 5th Actemra infusion in Friday. I don't have any pain, but I have some fatigue still and blame that on the prednisone taper being so fast (from 8m in June to 4m now)...this after 3-1/2 years on prednisone. An interesting thing happened....I started having breast "pain" in one breast about a month and a half ago, including the "letdown reflex" that you get when you are nursing!! This was aggravated by tending my 6 month old grand-daughter while she was "fussy"! I had a mammography, 3-D mammography and an ultra-sound...all clear. I decided to stop my bio-identical hormones which I have taken forever (15 years?)...saw my other doctor and she agreed. The breast pain stopped immediately two days after stopping the pills. My self-diagnosis is that the Actemra, prednisone taper and the hormones were no longer the right "mix". My rheumy said there was no Actemra connection to the breast issue (even tho my bra would get tighter during the infusion!!)....until I stopped the hormones. Obviously, everything has to be managed as I go along...the Actemra, prednisone, blood pressure med, thyroid med...and then still add the activity level and any additional stress! I agree with all your additional comments and recommendations...especially saying "No"...hardest of all. Glad you are feeling better😊

[Marie1479 in reply to Klah]

Glad to hear it wasn't the Actemra. I'm also on Synthroid for Hashimos. Funny the more reading I do there seems to be a correlation between thyroid & PMR ?

[PMRpro Ambassador]

Rayos SHOULD come in 2mg and 1mg doses. I use all 3 and that was why I developed the DSNS approach - to be able to reduce more slowly than just 1mg at a time.

[Marie1479 in reply to PMRpro]

I have all of them. Wish they came in .5mg!

[Marie1479 in reply to PMRpro]

I'm going to do DSNS approach from here on. You mentioned in an earlier post that the taper even with the Actemra was way too fast. You were absolutely right as soon as I started getting lower I put myself at risk for a flare. I believe the combination of the stress inflicted at the airport and quick taper was a recipe for disaster.

[PMRpro Ambassador in reply to Marie1479]

Not a flare of the PMR so much as your adrenal glands haven't had time to catch up and produce cortisol again - and that was the problem when you were under stress at the airport!

[Lafontainepam1]

Yes so many of us notice that stress causes a flare. I have been reducing very slow, at 1/2mg. Summer is over and things are quiet so I think maybe, this time I can make it from 7 to at least 5 with little problem! I live in the states where 1 mg tabs can be broken. I have had PMR for over 5 years and at 68 things get a little tough sometimes. Good luck, try to avoid STRESS😎

[Marie1479 in reply to Lafontainepam1]

I think tapering at 7 mgs even with Actemra can be tricky. Go slow and listen to your body

[MaryA_ in reply to Lafontainepam1]

How do you avoid stress, son lives in Texas (Harvey) and daughter lives in Florida (Irma). Both are ok now, but mother isn't!

[Marie1479 in reply to MaryA_]

Yes, some stress is just unavoidable. My neighbors son who is my son's best friend attends Stetson college in Florida. She was unable to get a flight for him to come home to New York. I spent a lot of time with her to calm her down. Luckily they only lost power for one hour ! College will open on Monday.

[Nap1]

Hi Marie. I was surprised to hear about your flare being that you are on Actemra. I guess the bottom line is stress. I also find I cannot exercise with the steroid myopathy. Stretching and small movements are about it. I didn't get shot last week because of stomach issues. Going for a CAT scan today. If all is OK I will resume. Had three shots so far it did wonders for my blood work. However It did raise cholesterol and the reactions go away quickly. Keep going girl. And keep in touch. I tried to get rayos but Medicare will not pay and it is very expensive. It is criminal for drugs to be that expensive. Especially for me since I already take a proton pump inhibitor for gerd and A hiatal hernia. Be well.

[Marie1479 in reply to Nap1]

Good luck with the CAT scan and let me know how things work out.

[Nap1 in reply to Marie1479]

CAT scan OK will get fourth shot ofActemra tomorrow. Probably reduce to 15 mg. From 17.5. ESR was 4 and CRP 0.8. Then I think the protocol is 1 mg every two weeks. Although if it's 10% at 15 I can reduce one and a half milligrams. How are you reducing.

[Marie1479 in reply to Nap1]

Because of the flare I'm reducing only buy a half a milligram a week however if I don't feel well at the end of the week I will not reduce

[Nap1 in reply to Marie1479]

That is the same as 1 mg every two weeks which is the protocol for Actemra. I like a half a milligram per week better. Seems like it would be easier on your body

[Jackoh]

Thank you for keeping us abreast of your progress and am following you with interest. Glad that things seem to have settled down somewhat for you. Continue to keep in touch. Also thank you for itemising all your tips- I'm also getting a bit better at saying "no" - still a long way to go though!!

[Marie1479 in reply to Jackoh]

Will do. Yes, "no" was hard for me as well but PMR gave me no choice. I just couldn't do it. I became a bit anxious and reclusive when I became sick. When I was at my worst I didn't want to leave my house. I could barely get to work. I've traveled all over the world and have always been very independent so this was not normal for me. I can feel my courage and the "adventurous Marie" starting to come back as I am feeling better and I also know myself better. My goal is to visit my brother and his family in London next spring.

[markbenjamin57]

Lovely post, thanks Marie!

Such Great and practical 'real world' Wisdom is always appreciated here. I couldn't Agree more

The only thing I will add (for the benefit of others here, especially) is NOT to read my silly Posts because, if you do, you will either lose the will to live or laugh so much that you'll 'have an ACCIDENT' (IN the UK, that's a warning in 'Teacher-speak' to infants who lose control of their bodily functions when over-excited). I don't know which is worse.... ;-/

As for PMRpro - you have said it all.

Thanks again Marie, keep on posting!

MB

[Marie1479 in reply to markbenjamin57]

After a busy work day I'm sitting in the Tower having a glass of wine and laughing as I am reading your post Mark. Thankfully I haven't "lost control" yet... anyway I still can't believe how far I have come. I remember my first post way back when blaming prednisone for causing PMR (PMR What?) and PMRPro setting me straight. I was scared and naive. I learned so much from all of you. Way better than going to any therapist ! 💗

[Marie1479 in reply to Marie1479]

Oh wait, and thinking I could do it the natural way ! Ha!

[JulieR2]

Thanks so much for your post it so lovely to read about others experiences. It's so inspiring and reassuring! We all have ups and downs and your lessons learnt is a useful reflection for us all

[Marie1479 in reply to JulieR2]

Yes Julie. I remember when I first started out, I spend hours on the Internet to find anybody who had recuperated or successful story. I think what happens is once people recuperate they leave the forums. Then I found this forum 💗

[enan-illuc]

Great post Marie1479,

Thank you for the feedback on Actemra, the information has been a great help for me. Your feedback makes the process easier, knowledge is a wonderful thing! I am down to 14.5 mg of Prednisone from 60 (for GCA) with the help of Actemra.

[Marie1479 in reply to enan-illuc]

That is fantastic!!!

[Nap1]

CAT scan OK will get fourth shot ofActemra tomorrow. Probably reduce to 15 mg. From 17.5. ESR was 4 and CRP 0.8. Then I think the protocol is 1 mg every two weeks. Although if it's 10% at 15 I can reduce one and a half milligrams. How are you reducing.

[Klah]

Hi Marie, I too am on Actemra injections...but one injection every 2 weeks. I just had my 5th injection (after 7 months of infusions). I am traveling and miscalculated the number of syringes I would need! I am just 2-3 days off, so I am putting off 2 injections by a day in order to compensate. I never feel that I am “looking” for the Actemra dose, but today I was. Have you ever missed a dose by a day or so? Thanks!