Update on tapering

[Grammy80]

One of the gals asked if I would update my progress or process..it depends on the day what I call it.

Like everyone...I was having a rough time tapering. Of course, I was anxious about my one eye and that would concern me when the headache would get so severe on the right side of my head. Naturally I was so fatigued..sometimes I felt like one foot in front of the other was an effort or impossible. Then as soon as I felt a little better, I would decrease more.

When I got down to 24 methylprednisolone per day, this is what the rheumy ordered:

drop to 16 mg for 2 weeks

drop to 12 mg for 2 weeks

drop to 8mg for 2 weeks

then 6 for 2 weeks, 4mg to 2 weeks and then 2mg per day untl I see him in April.

It seemed like such a fast reduction to me and I felt like a yoyo. I'd be down and in pain, then get to a more functional point and then boom. THEN I got the shingles on the right side of my face (my good eye) just before I went to 12mg and that really added a whole new dimension. I couldn't tell if the pain was from the shingles or the GCA, I felt miserable. Even the teeth in the upper right quadrant of my mouth were aching. Fortunately I saw the opthmologist in the midst of this and she put me on Gabapentin for the nerve pain AND my eye was fine though the shingle blisters surrounded it. Also I could tell some of the shingles were really drying up.

This Wednesday I drop to 8 mg per day, but for four weeks this time. I must say that reading in the forum and seeing how cautiously the tapers were done for the most part made me probably more anxious. This Gabapentin makes me feel like I just had a few glasses of wine!! Que Pasa!!! It has certainly cut the nerve pain from the shingles.

Each time I reduced I wound up calling my rheumy's office and he would ask me to try to stick it out...the second time when I relayed all the symptoms was when he said I think you may have the shingle. I went to my Primary Care and he was right.

For me, this tapering business is a real mixed bag. I've always said I'm in no hurry to be a 'tough cookie' and get to 0 prednisone. If my kidneys or liver are going to crash...then share that with me and maybe I'll feel differently.

Mentally I'm in a good space...and physically we'll see what happens Wednesday when I cut by 4mg again...I'm not excited about it.

I do know I would be in a different place mentally if it wasn't for all of you~!

[Skysey]

Thank you Grammy. Your reply has been very helpful. I think I will be anxious as I gradually taper the steroids. I am glad you are feeling more positive and I wish you well when you reduce on Wednesday. Let me know how it goes. Skysey.

[Grammy80 in reply to Skysey]

Well, Skysey, I'm happy if it helped a little. We all seem to be on a little bit of a roller coaster ride but at least we aren't doing it alone. Just the fact that you were diagnosed is a positive!! I'll be happy to go on the taper journey with you....and we will all make it~!💗🌸

[Hidden]

Haven't you had the shingles jab Grammy? We had ours at seventy. You poor thing coping with that and PMR.

You mention your back top teeth ache. I'm experiencing that too and yesterday

left hand felt weird with a little numbness and slight tingling. Wondering what

this is.

Hope today finds you feeling well.

best wishes Anne

[Grammy80 in reply to Hidden]

Hi Anne, I indeed got the shingles on the right side of my face...and I will be 80 in September and it is GCA that I have. I lost the sight in my left eye and sure didn't want the shingles crawling in my eye. Fortunately, they are around my eye and drying up. I go to my primary care or GP tomorrow for a check. The dentist said my tooth pain was caused by the shingles because of the nerve pattern that was affected. I was put on gabapentin which has really cut the discomfort of the shingles. I'm curious to see if it lessens the adjustment to my next cut in prednisone dose this coming Wednesday.

I'm feeling better than I was a few months ago and that is the way I look at it. If I don't feel like doing anything..I don't..I just rest. Right now I am trying to organize my medical bills from last year for tax filing...luckily a friend has helped on a few mornings!! I should get a bit of a refund I hope! Take good care, thanks for your kindness.🌸🌸🌸

[Hidden in reply to Grammy80]

So happy to hear you're on the mend. You didn't mention whether you had the shingles injection prior to getting shingles. The jab is suppose to protect us. Sounds as though you live in the States due to your medical bill. I'm in the UK. What symptoms did you get for the GCA? Shingles is nasty and can also cause blindness if it gets into eyes. I'm experiencing a little numbness in my fingers on left hand and this morning in the toes on my left foot. Wondering if this is a symptom of PMR too. I hate keep bothering my NHS doctor with different symptoms, but how else would we know if they're connected. My top left side tooth area hurts a bit too. I know my teeth are all fine though as had a complete mouth X-ray before Christmas due to some discomfort on both sides of mouth top back teeth area....always being aware of jaw pain of cause. Are you taking the 70 mg once a week Alendron Acid tablet to protect from osteoporosis? I still haven't taken mine as still waiting for a referral from my GP to get a Dexa scan privately. As he wasn't forthcoming in letting me have it on the NHS.

I'm hoping the Calcium with D3 twice daily is enough. Also what mg of Omeprazole are you taking? They are supposed to protect our stomach.

I take just one 20 mg, but on box it says take 2 daily. I'm not a rebel, just

hate taking all these different tablets.

Take care and keep well

kindest regards

Anne

[Grammy80 in reply to Hidden]

I wishs I had $5 for every tablet I swallow every day...for just one week~!🤣😊

I'll try to answer everything by referring back~~You are right, I am in the States and though it sounds like we possibly have better access to doctors our medical system just has a different set of problems. In many cases it is the private insurances dictating the medical treatment and if you don't have a good private insurance the cost of the medications would bankrupt you. I'm very fortunate in that my insurance premium is not high, $50 per month, and my benefits good. Actemra for example is about $2700 per injection. I inject weekly and it only cost me $8.50 for 4 syringes. I do believe my costs are lower now??? because my medical bills were so high. I don't know why, but I'll take it.

I did get the first half of the two part shingle shot, but none of the drug stores got a sufficient supply of the second half. That happened to thousands of people here, Anne. They underestimated the production.

They symptoms I got for GCA were severe neck pain, from the shoulder up to the skull. Very severe headache on the left side and top of my head with a sensitive skull as well as pain around the eye socket. My jaw joint hurt and I could not chew..it really hurt to open my mouth. All classic but I was misdiagnosed with a sinus infection and sinus headache but was given prednisone, 5 days of 60mg per day with no taper. I stopped on Saturday and Sunday I had four passing incidents of distorted or blurred vision. I woke up Monday morning with no vision in my left eye.

My tooth problems were an extention of the inflammed nerves from the shingles, which are still skirting around my right cheek but looking so much better.

To protect my stomach (and years ago I had two bleeds) I take Dexilant and Ranitidine tablets. I am taking calcium, Celebrex, magnesium, potassium and Vitamins B and D3. Once a week I take Fosomax. On top of that I take a few meds for seizures~I haven't had a seizure for 44 years but started to have auras as the prednisone was increased and made the low maintenance dosage of meds I was on ineffective, it just watered it down. Thankfully, I did not have a seizure but have been put on two additional meds while taking the prenisone and Actemra. Down the road we will deal with that though at my age, why bother. If it is not broken don't fix it.

So that is my story, Anne. I hope I answered all your questions. Here in the states I have Medicare and private insurance. For example, for a Dr. visit (any doctor) I only pay $20. The thing that is costing me the most now is transportation to my visits. We have no public transportation where I live (it is poor in the US anywhere) so I either have to pay a private person or a cab. Friends do take me to some but they have a life.

Hang in there with the rest of us. Have a good day!!🌸😻

[Hidden in reply to Grammy80]

Good morning and good reply, thank you. Well, what you've been through is awful. I know about the medical for the US as I have family in Pennsylvania. Us Brits are fortunate having the NHS (National Health Service) However, with the population growth due to all the immigrants now, it's hard for hospitals and doctors surgeries to keep up, consequently hard to get appts. Had I waited for my doctor to refer me to a rheumatologist back in Dec 2019, I'd still be waiting. To date I've spent (self funding) £2,000 on seeing the rheumy and blood tests, chest X-ray. Didn't realise PMR can affect our lungs, but evidently it can. Paying out again next week to see a private GP to get the Pred to take away on holiday with me in June. I always like to be prepared and being on a cruise, just one week, I want to be protected and take the 60 mg Pred with me, hopefully, they will never have to be used. And as I think I've said before, waiting for a private Dexa scan too, just to check out my bone density. I guess I'd better take the omeprazole twice a day then as you ended up with a bleed in your stomach. I take daily supplements too and have done for years. Zinc, Magnesium, C, Calcium D3 and K2, Biotin (for hair) Lutein with Zeaxanthin (for eyes) I've stopped while taking the Pred Omega 3 as it doesn't mix well with the pred, the internet have said. So I shake rattle and roll these days too with all the tablets. haha. Are you East or West coast ? I'll just add. Our NHS isn't free, we've all paid into all our working lives, free after retirement. Years ago when I was working, a National Health Insurance stamp would be taken out of our salaries for our medical appts and any surgery that is needed. Everyone, unless retired have to pay for prescriptions which cost £9 per item. We also have National Health dentists. So we're a lot more fortunate than many countries.

Anne

[Highlandtiger in reply to Hidden]

I'm just very glad that so many skilled immigrant doctors and nurses have remained here working so hard to help keep the NHS going, not to mention a lot of the cleaning staff and porters who come from other countries too. Long may that continue but I'm not sure it will.

[Hidden in reply to Highlandtiger]

Absolutely, what would we do without them. They're are so nice too, very polite and respectful. Shame we lose the best of our people to other countries.

[PMRpro Ambassador in reply to Hidden]

Or drive them away. A lot of doctors and scientists have left for better conditions elsewhere never mind the rest.

[Highlandtiger in reply to PMRpro]

Indeed. I have a very close family member who is an A+E doctor and who has moved to New Zealand recently for much better conditions and has found that 'junior doctors' (I hate that terminology being used for such highly skilled and experienced people who just don't happen to be consultants yet) are treated with respect by the NZ government which she has contrasted with how they were being treated by the government here. So, yes, they are being driven away. Not a smart move really.

[Grammy80 in reply to PMRpro]

As I have mentioned before my son and his family live in Canada. They are experiencing the same thing in Nova Scotia...doctors leaving the rural areas to go to the cities. It is especially frustrating when they pay a high tax on everything and cannot get the physician services. Does it work for the greater benefit for all? I hope so.

[pugrescue]

That has to be the fastest taper I have ever seen. All of those decreases are 25-35%! I am at the 10mg level after nearly a yr from dx of GCA, and could not have done "your tapers" at any point thus far. I am sure others with more experience will be on soon. Prayers. Joan

[Grammy80 in reply to pugrescue]

Thanks...I wrote a long response to Scoopitup. What happens is I feel like 'you know what' all the time...then I get a few days of something normal...and I'm cutting again. I'm going to make an appointment and see if there is any reason why he can't go easier on the old gal. I know he has concerns about my ulcer and diverticulitis history ..that may be it. The first time he considered Actemra when the inflammation markers just wouldn't go down after reviwing my medical records he decided no and kept working with the methylpred. My diagnosis with blindnessin one eye was August 2019 and the does of methylprednisolone were very high. He said he had never seen a case like mine that the GCA was 'raging' and sent me for a consultation with a rheumy in Portland, Maine and Boston...all agreed that the 'gold standard' for me was methylpred and then add Actemra.

It does take its toll for sure...I know they were very concerned about the vision in my right eye but I only lost a little....I'll see if I can go slower. I thought of it so often as I read all the posts on tapering from my commrades in the UK.... Thanks so much xo🌸💗

[Hidden]

What is the purpose of such a fast reduction? Can't really call it a taper. Is there a specific plan he has that I have missed? Tell him you are doing no more than 10%.... Its your body not his. I "only" have pmr and am 4 years in at 7mg plus steroid sparer so that reduction makes me psychically itchy!!!

[Grammy80 in reply to Hidden]

Just wanted to add...being alone with no family I focus so much on my mental health and keeping a positive attitude going through all of this....sometimes I don't stop to think maybe it doesn't have to be this rough. So instead of working on enduring the taper....I will talk to the doctor about going slower...thanks so much.💗💗

[Hidden in reply to Grammy80]

You do seem to have a very positive attitude. We all have blips. I just remember the feeling of being overwhelmed by trying to execute the Dr's plans. Having managed my own tapering for 18months now it's been less stressful. Once you start getting into single figures the side effects of pred are minimal as you are close to natural levels. I am at 7mg and that is around the level our body naturally produces so I think I have zero pred in general and my simple terms. If I have to go to 10mg then I think if it as 3mg and so on. Fingers crossed Dr listens properly. 🤞

P. S. Hopefully the actemra will stop symptoms but even so you need to ensure you are patient with the old adrenals!

[Grammy80 in reply to Hidden]

I really appreciate what you share!! I can't imagine what he would say if I managed my own taper..,but I'm not one of those that thinks Doctors are on a pedestal, I've seen too many and been the butt of mistakes. I'm definitely going to make an appointment. Prior to this forum I knew nothing about cortisol and the adrenal glands, so he has some explaining to do to me and I just don't want to cut so drastically. PLUS....I was just diagnosed in August...so all this in seven months?, not quite. I need an explanation.

Thanks...it has been like putting my system through the wringer every two weeks. I've accepted it as what has to be....so we'll see if it has to be and if so...Why?

Your the bomb...and that's a good thing!!😉😉😻

[Hidden in reply to Grammy80]

💜💣💥

[Hidden in reply to Hidden]

I started on 15 mg in Dec. Then had to reduce due to not sleeping on that mg. 10 mg sleep pattern returned. 1 Feb started to taper by 1 mg per month....so far so good with only a little muscle ache. First of Mar will be 8 mg. Hope by the time I get to April and on 7 mg I won't have to return to higher dose again. I would absolutely dread having to take 70 mg for GCA. All those poor ladies that have had to and then try and taper with awful side affects. This is such a horrible disease !!

[Hidden in reply to Hidden]

Having been an insomniac for 25plus years I envy people who can sleep and sympathise totally with the sheer tiredness and frustration that happens when it first strikes. Just remember to take it easy and don't ignore symptoms. At this stage I would be doing 4 to. 6 weeks at each dose. I got to 8mg and flared.... Back up to 15mg. 4 years later I have got to 6mg for 12months and flared last autumn and am now at 7mg. Slowly slowly catchy monkey.

At 13mg the second time I accidentally took 2 doses and had a brilliant day but felt like I had drunk 20 cups of coffee. 80mg must be a wild ride!

[Grammy80 in reply to Hidden]

😟😟Tomorrow I go to 8 mg...first time in the single digits and am probably a tad bit anxious.✌🏽✌🏽✌🏽

[Hidden in reply to Grammy80]

I will keep my fingers well crossed... 🤞🤞

[Grammy80 in reply to Hidden]

Thanks...at least this time I will be staying at 8mg (I hope) for a month...all prior adjustmentss have been only 10days to two weeks. I think GCA is still the boss...not so much what the rheumy wrote on paper. I'll give it my best shot.🤞🏽🤞🏽Found the right emoji~!💗💗 I'm curious if the Gabapentin will make things smoother? My Primary Care yesterday encouraged me to reduce the dose of that if I could but not at the expense of my comfort! Love that guy!!

On February 24 I go to Portland, Maine to see my neurologist. Hopefully, since I have acquired other medications she will be able to wean me off of the maintenance dose of two meds I've had for decades. ~~One issue at a time~~Have a good day!

[Hidden in reply to Grammy80]

Keep that nerve pain from shingles under control. All things can be tapered in time. 👌

[Grammy80 in reply to Hidden]

👌The Gabapentin they gave me for that makes me feel like I can take on the world.....until I can't. You know what I mean!

[Hidden in reply to Grammy80]

Having started taking it 3 weeks ago I do indeed!!

[Grammy80 in reply to Hidden]

Well, then you know exactly what I'm talking about. It has put a little bit of wind beneath my wings.😎

[Grammy80]

I'm the only person I know going through this ...exept all of you folks!! As I taper and read everyone else's post it does seem radical to me. I have read repeatedly about reducing by 1.5 or so. Also, I am making a change every two weeks.???? Do you think it is because I am on weekly injections of Actemra too? Also...20 years ago I had avascular necrosis in my left femur from prednison and it cracked when I rolled over in bed and had to have a hip replacement at the age of 60.

I am not due to see him until April at which time I am supposed to be down to 2 mg. I didn't like the idea that he wrote out that taper and set my appointment for when I got there. I'm going to call his office for an appointment. I need to know why?

When I cut that much I feel really crappy for 4-5 days and then feel better....when the shingles came along on top of it, that took the cake.

Thanksxo

[PMRpro Ambassador in reply to Grammy80]

In terms of the GCA the speed of taper together with Actemra would be acceptable. BUT the Actemra does nothing in terms of the other problems of reducing the dose of pred: steroid withdrawal discomfort, which you are obviously experiencing and, when you get there, the return of adrenal function.

My opinion is that it was fine to speed down to 8mg - PROVIDING that the patient doesn't suffer too much with steroid withdrawal which can also be miserable as you are finding out. I wonder if maybe the DSNS approach might make you feel less awful during such a large step down - one day at a time of the new much lower dose might work but equally I suppose it might just spread a lesser degree of feeling rubbish.

[Grammy80 in reply to PMRpro]

Thanks so much!! I also have other medical issues and medications I know he is probably considering. He also had me reducing every two weeks so it was 4-5 days of really miserable withdrawal, get up to new normal and then cut it again. I was going to call his office today but decided not to for two reasons.

Last Tuesday I was put on Gabapentin which I credit with a lessening of overall discomfort, really less. This Wednesday I cut by 4mg so I will be taking 8 per day. For the first time, he wants me to stay on the 8mg for a month before another reduction. I think I will wait and see how it goes Wednesday and Thursday and if I feel I should...then I will call him. I totally agree the DSNS approach would be easier on this body!!

Thanks so much for your thoughtful input.🌸🌸

[Schurch]

What has worked for me is cutting down 1/2 a mil about every 6 months. I know that sounds crazy. Yet with me just 1 miligram a month, I was exhausted and the pain came back. Everyone is different. But if you experience being tired and the pain returning, I would discuse with my doctor a much slower approach on cutting back on your pred. I am down to 6 1/2 mil of pred now from 10 mil and am doing well I am now on my 5th year of PMR . Good luck to you. PMR can be a very stressful condition . Hopeing all of us will eventually go into remission, and this evil condition will not rear it's ugly head again. I feel like PMR is not given much attention until I got on this website I had no idea so many suffered with it There have been times I thought I would never get better. But never trust it I have been pain free at times these last 5 years only to have it kick me on the butt all over again the good thing is even if you have to stick with a low dose of pred for a long term of time from what my rheumatologist tells me that is not harmful to us.

[PMRpro Ambassador in reply to Schurch]

It sounds as if you have a very sensible rheumy!

[Grammy80 in reply to Schurch]

Like PMRpro said....your rheumy sounds great!! I do not have PMR, I have GCA.

My left eye is blind (fortunately this doesn't happen to many) and since this happened in August~my brain is adjusting all the time and at first I felt really limited and the tons of prednisone created blurry vision in my right eye but now it is much better. However, I get very protective of my right eye. The shingles on that side of my face worried me and each time I have cut the Prednisone, the pain on the right side of my head makes me anxious.

Fortunately, the folks on this forum whether PMR or GCA doesn't matter....they have taught me that this is a process, a procedure of learning to manage your disease...and that has removed a great deal of my anxiety.

This Wednesday will be my first trip into single digits of the prednisone...so we shall see.

Thanks for your response!! and my best to you!!🌸🌸

[Schurch in reply to Grammy80]

I wish you the best of luck to you. Don't ever give up yes this all can be managed with a good rheumatologist.

[Grammy80 in reply to Schurch]

🌸💗🌸