Difficulty tapering and questions~!: I'm about to... - PMRGCAuk

PMRGCAuk

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Difficulty tapering and questions~!

Grammy80 profile image

I'm about to spit nails since I have been unable to get my rheumy to return my call. I feel I'm in better hands with the forum at any rate.

I'm a GCA-er...since 2019 and lost sight in my left eye. After my initial infusions of steroids, I was on 125 mg per day of prednisone, then 100 mg for a month before switching to 85 mg per day of Methylprednisolone tabs plus Actemra, about 10/2019. I've gotten near 10 twice and had vision issues, but by July 2020, I was on 20 mg daily. Hoorah!

Working with this new rheumy in Indiana and reducing about 1 mg per month, I got down 13 mg without any problems. I began to experience breathing issues, chest pain, and lowered oxygen levels severe enough to land me in the hospital. My arteries and lungs have checked out, and I'm thankful for that. Then the rheumy felt, 'we have to work harder at getting you off the steroids.' I am 80.5 years old. We started decreasing by one mg every 2 weeks. It was OK at first, although I had intermittent left temple pain and some sharp head jabs; after being on 11 mg for about 5 days....my head hurts AND my butt and upper legs. My leg muscles feel like they are wrapped in iron. Could this be the taper? I've never been diagnosed with PMR, but?

I am still taking 11mg per day....I believe I should increase for sure. Should I take an extra 5 mg for a few days? Then where would you start and how slowly taper? Would you go back to 1 mg a month or 1/2. My internist seems to blame the steroids now even though he has a sleep study set up. I have sleep apnea, and with my machine, my SPRO 2 goes to 85 at night. AND....I need the steroids...

I'm not depressed but am I at the 'It is what it is' stage....maybe I should be thankful. Sorry...I don't sound very pleasant today..I'm still chewing those nails.💖💖

29 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

1mg every 2 weeks...too quick IMO...hardly gives your body chance to decide current dose is okay before you step down again ..and before you know it you’ve gone to low.

I would try tge extra you suggest for 5-7 days.....then only drop back down 14mg..as 13mg the issues began to appear.

I would then go back to 1mg a month.....much more likely to be successful...I think you’ve proved that quicker taper doesn’t!

As for the nails - spit them out!

Grammy80 profile image
Grammy80 in reply to DorsetLady

Thanks ...and you are right~ life is too short for nails, they are out~! I know I needed confirmation of my thinking as far a the tapering even though my common sense said increase. Sometimes it seems there are many 'fronts' to deal with but steroids are vital, and that is simply the way it is. Thanks for the reinforcement!💖💖 Just call me No Nails!!😘

Staplehurst profile image
Staplehurst in reply to Grammy80

Ah, bless you. Feel for you Marilyn and hope you decide which taper is best for you. You are unlucky that you have other health issues going on too. Here for you via email, you know that.

Anne X

PMRpro profile image
PMRproAmbassador

I just said somewhere else - WHY do they decided to go FASTER as they get to lower doses?

PMR can be a symptom of GCA - but you may not notice it at the start and the high doses used for GCA deal with it effectively. But as you get to lower doses it can resurface - and PMR often lasts a lot longer than GCA and is more difficult to manage in some ways.

Too fast reducing at this stage - DL has said it all.

Dear Grammy, DorsetLady has advised. I just want to wish you well. Sounds like you’ve good reason to be cross and you continue to sound so well balanced. Hope you feel better soon 💐

Take care, Grammy. I hope you'll be feeling better very soon.

Oh Grammy, you could do without this especially with this sudden ‘Let’s get you off Pred, no matter what’.....

It could be symptoms of the fast taper, it could be PMR that’s been hiding under the doses you’ve been on? Medics love to Blame the Steroids! I think my GP had it tattooed on his heart! 🤪

As the others have said you could try a couple of days on an extra 5mg, then go back to where you were comfortable @13mg/14mg then start a slow taper again from there.

I’m just starting the slow, slow drop to 12.5mg with additional MTX

Good Luck 🍀 you can’t be in pain to suit someone else idea of a suitable taper.

From The Only Type of Nails Allowed MrsN💅🏼

Hugs Angela x

Staplehurst profile image
Staplehurst in reply to MrsNails

Nice message from Angela. Take care Marilyn

You’ve had good advice. I just wanted to wish you well. I like your new photo. X

Thank you all so much....are you ready? The rheumy's nurse called said add 5 mg for 5 days and then return to 15mg and see the Dr. at the end of the month at a previously scheduled appointment.

Then she called back and said the Dr. wanted to see me ASAP to 'continue the downward trend.' Well, I will see him tomorrow and am armed and fortified with good input from all of you. Maybe there is something I don't know....continued tomorrow! It shakes my confidence, to say the least. 💖

Staplehurst profile image
Staplehurst in reply to Grammy80

I bet it does....stay strong, but also get your point across too. Have you mentioned the PMR/GCA Forum to the medics. I have to my rheumy, he was impressed and thought it good that we support each other. Knowledge is good !!

Grammy80 profile image
Grammy80 in reply to Staplehurst

Yes, I have, in hope that they would mention it to others. I'd have been lost without all of you. Here in the states if you have an autoimmune disease, the GP steps aside 100% and only the rheumy 'can manage the steroids', while he/she deals with other health issues. The GP will never step into the PMRGCA arena. I'm a whole person with an autoimmune issue and sometimes it is so frustrating!! Thanks for your thoughts!!💖

Telian profile image
Telian in reply to Grammy80

You’re armed with information - take your notes with you - don’t let the doctor rush you - good luck.

Let us know how you get on. 🌺

Grammy80 profile image
Grammy80 in reply to Telian

My visit is 3 pm Central Time USA....I will post but hope you are fast asleep.💖

nuigini profile image
nuigini in reply to Grammy80

I'm not a GCA person, but agree wholeheartedly with the advice you've been given. Easy to say, but stand by your guns and good luck!

Grammy80 profile image
Grammy80 in reply to nuigini

💖

Ooh sometimes our doctors really don't understand do they. We know we need to reduce at some point but it will only work when PMR/GCA allows. I'd be spitting feathers too 🙄.

I think your reasoning is sound - slow down. And I hope you feel better soon and you get those nails out. Sending good wishes.

Oh you have had it tough but you sound strong and determined now, good for you💪. I just have one thing to add, I was advised on here to try the 0.5mg reduction once I hit 10mgs. I have had ups and downs in the past but that is working for me at the moment. 🤞😘

Grammy80 profile image
Grammy80 in reply to LemonZest11

Thanks so much....💖

I haven't had GCA, only PMR but I have the same issues re inflammation in chest, breathing issues, concrete legs, sleep apnea. All this goes away on higher steroids and comes back as I reduce. So I can't see how getting me or you on lower steroids is going to help, unless they have a Plan B to manage the inflammation. You can't just ignore it and push on or things will get worse I'd have thought. It may be that you need more steroids for quality of life and mobility. As PMRPro says patiently every day, we are not relentlessly going for zero, we are trying to find the right balance.

Balance is key, for sure. He really put my mind at ease saying that the symptoms will be our guide...he said to try to decrease because of the steroid side effects...but there can be no plan in concrete. I want to get lower but I sure but I'm not in a race....it isn't a competition...slowly. Thanks!💖

I'm in the same boat, I'd love to reduce steroids and eventually get off them, I hate all the side effects like moon face but have learned from bitter past experience there is no point trying to rush these things, you only end up flaring or full blown relapse and be back to square one or worse. Patience is key. There is no point getting angry or bitter about it either, acceptance is also key - resistance is futile! I just do what I can every day to be as healthy as I can. We'll get there, one day. Please remind me of this next time I'm having a rant about how unfair PMR is! x

We can remind each other. One thing I laugh about is ....I wonder how wrinkled my 80-year-old face will be if I ever get off steroids! Haha....people say I don't look 80. Ha, they should see the rest of my body.🤣😂😃

Constance13 profile image
Constance13 in reply to Grammy80

I wouldn't like anybody seeing my 82 year old naked body either (except OH of course). Dressed I look "really healthy" most people say. But I was one on the few people who lost weight on pred (10 kilos) and I've lost another 7 kilos since then. At 5'5" and just under 57 kilos I just don't want to loose any more weight.

PMRpro profile image
PMRproAmbassador in reply to Constance13

My OH is 170cm-ish - weighs under 50kg. Imagine ... Or rather, don't ;)

Constance13 profile image
Constance13 in reply to PMRpro

I just can't! Poor D - he

must be in a terrible state. How does he manage to keep going? I often wonder how your are both getting on.

Weather not helping here - lots of rain, very little sun.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Same here - really UK-type BH!! Not the usual number of Germans here for Pfingsten but I almost feel sorry for any who came.

Constance13 profile image
Constance13 in reply to PMRpro

We had some sun over the BH so Bad Sass.... was packed. All restaurants/hotels in the middle of Soest were booked out and there was a "mini" Kirmes there (literally - for children) but parents, grandparents, brothers, sisters, friends were all there too. Mad!!

Lockdown openings are happening far too quickly here.😏

PMRpro profile image
PMRproAmbassador in reply to Constance13

I understand their desperation to get back to normal - but they'd get there sooner by taking it slowly!

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