Second Rheumy appt went well but....

[Dydee]

So, went for blood work results and second consult with Rheumy. I like this doc. He tells me what he would like me to do, I tell him what I feel comfortable with and he says that will work too. So, my 15 mg a day dosage has finally been keeping me in a fairly comfortable place and my inflammation markers are on the low side of normal. Doc told me it was time to start tapering and I told him those were my thoughts too.

So that nobody has to check my bio, I diagnosed myself from hours of research this last June with GP agreeing with me, after 10 months of misery. I was on 10 mg for a few weeks but still struggled so went to 15mg. Been on that now for about a month. I have been feeling fairly good. Minor discomfort when I exert myself a bit with the next day being tolerable and short lived added discomfort. He suggested tapering to 12.5, then 10. I am so afraid that is too rapid and suggested 15 to 13 but not straight up, do 13 a couple days in a week, then 3 days in a week, etc. Then once on 13, stay on that for a week then do the same tapering to 11, repeat but now taper to 10. Stay on 10 to see how it goes, then start tapering 1 mg at a time, SLOWLY. He agreed that to be extra careful would be fine. So the new plan is 15 to 14 to 13 etc. But I still want to follow the same schedule changing 1 day, then 2 days, etc. a week. What do you think?

I also am wondering what I might experience, I know everyone is different, so that I know if I need to stop or slow down the taper. I do NOT want to go back to where I was at ANY point where I can't get out of bed, can't raise my arms to even comb my hair and brushing my teeth is a real struggle. I'm sure I will experience some added discomfort as I taper down but how much is acceptable and generally for how long? Doc is giving me a LOT of 1 mg tabs so I can prolong a change, or go back up a tiny bit if I need to and not do anything drastic to mess up my tapering. Although doc said I shouldn't believe too much of what people say or what I read. LOL

I don't know what I would have done without this group. You guys are a blessing. By the way, I did go to the donation page and not sure what would happen charging Euros to my Visa and not sure what the numbers are in American dollars. LOL

[123-go]

Hi, Dydee. 10 months of misery and started on only 10mg is a very low dose. How you managed for all those months with the symptoms you describe is scary.) If you're now on 15mg and things are only 'tolerable' I feel you shouldn't be reducing yet especially as the inflammation will have built up to a great extent before being prescribed steroids. You will be getting advice on this from more experienced and knowledgeable members very soon and also for your currency issue. Stay strong.

[Dydee in reply to 123-go]

Actually my doc put me on a 10 pack of Pred. last June so 40 mg for 4 days, 30 mg for 3, 20 mg for 2 then 10 mg every day. I never felt the 10 was enough but came down with Covid my first day on 10 mg so waited until I was done dealing with that to change. My next refill I went up to 15 which has been controlling it quite well for about a month. I am hoping the slllooooowwwwwww taper will work too.

Thank You!!

[DorsetLady PMRGCAuk volunteer]

Your tapering plan sounds okay, but you will only know once you start trying it.

One point I would make about feeling a bit achy the day after you've overdone things - is a. try not to do too much on days you feel good, very easy to do, but as you've found out, it bites back, and/or you need to stay on 15mg for another couple of weeks and see if it resolves.

sure Fran wil advice on currency issues - but £15 sterling is about US$19 - but you may also get a transaction fee.

[Dydee in reply to DorsetLady]

Thank You!! I try to be cognisant of what I will suffer if I overdue. LOL Sure not worth it. But really it has been minimal and short lived. That made me decide it must be time to taper.

Anyway, I will try the donation link, what's the worst that can happen. LOL You guys are great.

[PMRpro Ambassador]

"my inflammation markers are on the low side of normal." - that means that YOUR normal is at the low end of the range so take that as a guide in future.

The approach you are suggesting sounds good - but don't worry about what might happen until it happens. If you are reducing in small steps (you are) and carefully (you are) you shouldn't have any steroid withdrawal problems. If you do, they will be shortlived and improve after a few days. If they get worse - the likelihood is that the dose is too low and you should go back to the previous level asap, wait a bit and try again. It isn't a race ...

However - if you are in pain now, wait before starting to reduce.

The bank does the work - it happens every day and at one of the best exchange rates available. Never pay for something in another country with credit card in dollars - use their currency. The price in dollars in a shop is usually at a horrendous exchange rate - very much to their benefit!

[Dydee]

Thank you so much!! Actually, my pain level has been good. Even after exerting myself a bit only minimally worse the next morning and bounce right back.

I am just the type that needs all the info laid out before I start on a journey and don't want to give up if pain gets worse if it will subside in a few days. I can handle that now that I know. If longer than a few days I just need to bump up a bit for awhile then start back down again. Got it.

Will try the donation link then. Thank you.

Oh, by the way, I was also wondering if a soak in a hot tub or jacuzzi is a good or bad idea for PMR? Not sure if the heat is a good thing.

[123-go in reply to Dydee]

I see no harm in a soak in a hot tub as long as the hot isn't too hot. I read somewhere that hydrotherapy is a good idea but you may need to seek advice on that and it would depend, of course, if you have a hydro-pool near you. Baths are difficult for me as it takes ages to climb out but I love the shower and always benefit from that.

[Dydee in reply to 123-go]

Yeah, getting seated in the tub is hard enough but getting back up and out???? NOT worth the soak. An easy in easy out small jacuzzi with seats would be great though.

[123-go in reply to Dydee]

I used many previously unspoken swear words during earlier struggles! My mother-long gone now- would have been horrified!

[Dydee in reply to 123-go]

I was too miserable to even swear. Horrible pain and extreme weakness was the focus of my life then and not having a diagnosis I was taking 4 Ibuprophen every 12 hours and I HATE taking meds like that but the minimal relief it gave me seemed worth it. I still worry about the damage it might have caused. So glad I am at the point of being able to taper. Sure not taking ANY chances of it getting out of hand again.

Learned a lot on today's HealthUnlocked comments. Thank you everyone!

[123-go in reply to Dydee]

Dydee, I remember that phase well: my husband lowering me on to the toilet 😰, cutting up carefully prepared food and me being able to swallow only a spoonful or two, lifting my legs into the car to go to blood test appointments......how far we've come and how much we have to be thankful for.

I'm gearing up to writing a new post about my latest news!

[PMRpro Ambassador in reply to Dydee]

Can't have been PMR then ! There is a side effect of PMR that some of us call PMR Tourettes ...

[Dydee in reply to PMRpro]

The Ibuprophen acted like a weak aspirin just taking the sharpest edge off the pain but did not help with the weakness, tiredness or the deep aches in my arms, shoulders, hips and upper legs. I too could barely get in or out of a car, showering was a real challenge, almost had to drip dry as I couldn't handle a towel very well and really struggled to wash my hair. I had no problem with the eating process but didn't have much appetite.

Can't wait to see your latest news!!

[Dydee in reply to PMRpro]

Hmmmm, I haven't seen PMR Tourettes mentioned.

[PMRpro Ambassador in reply to Dydee]

Don't think we've talked about it recently. My language becomes quite disgusting when I flare - and it seemed I am not alone!!!!

[Dydee in reply to PMRpro]

LOL Mine only gets that way when my husband's temper flares over nothing. LOL By the way, I thought I'd share a funny thing about my Rheumy. After determining how I was going to taper, and discussing the different strength prednisone tabs, rather than do different prescriptions for each month, he prescribed fourteen 1 mg tabs, once a day for 30 days. So the pharmacy had to count out 420 pills and laughed when I picked them up. She said she pictured me having to count out that many every day. LOL I told her my doc didn't want to have to do much figuring but that I was really taking a 10 mg plus the right number of 1 mg each tapering step.

[PMRpro Ambassador in reply to Dydee]

Lord - he wants to try taking 14 blasted tablets! Not to mention all the filler stuff in each tablet - which are what cause as much in the way of problems as the pred itself! They don;t get their knickers in such a knot here. All tablets come in the original pack from the manufacturer - so either have 28 or 30 tablets. You get enough for 2 months - and they trust us to get it right. What a novelty ...

[Dydee in reply to PMRpro]

No, he just didn't want to have to figure out how many different prescriptions I would need and change it each month. I can still get my 10 mg and will take FOUR 1 mg the first step to 14 mg, then 1 10 mg plus THREE 1mg the next step down, etc. He gave me enough to last quite awhile and enough so that if I have to stay on one dose for awhile, or go back up a step for awhile, I will have enough to play with.

[PMRpro Ambassador in reply to Dydee]

I used the jacuzzi and sauna in the gym I used during the 5 years I had PMR without pred and found the heat really helpful - then I could go and do a Pilates or yoga class even without an aquafit class.

We used to suggest using an electric blanket BEFORE getting out of bed to make movement easier and also stretching in a warm shower. PMR does respond to warmth for many people.

[Dydee in reply to PMRpro]

Awesome. I know how great it always was when I had back issues. A half hour in a hot jacuzzi kept me pain free for 24 hours. So glad to hear that. Have been wanting a small jacuzzi for the patio. LOL

[123-go in reply to Dydee]

You now have the perfect reason to have one installed. 😀

[PMRpro Ambassador in reply to Dydee]

Just make sure it is clean!!!

[Dydee in reply to PMRpro]

LOL Yeah, no kidding.

[CRYSTAL11]

When I have tapered down it’s been very slowly. 1mg per month of everything is ok.

[Dydee in reply to CRYSTAL11]

My plan is the same. 15 mg to 14, 14 to 13, till I'm at 10. Will stay there a bit then start another taper. If I run into a bit of trouble will hold there until I can tell if it will pass. I can adjust up a bit if need be but not a lot so I don't have so far to come back down. Really need to off this stuff. I had gone down a size to ideal just before starting to feel bad and now my old clothes that were too big are tight. And I eat healthy, low carb naturally.

[CRYSTAL11 in reply to Dydee]

Some people put on weight but others are ok. For me I have always put on. Or should I say struggle to stay the same. I get really hungry 😋

[Dydee in reply to CRYSTAL11]

I'm positive part of it is the total lack of movement for the first few months before diagnosis too, but I noticed I have gone up even more since Pred. Still don't move a LOT but a lot more than I was. I think I'm up to starting on the treadmill but trying to wrap up a big project outside and do a little then rest, go back out in evening and do a little then rest. LOL Boy, I have a built in excuse. This blog has taught me well.

I would actually rather be back to my old active self.

[CRYSTAL11 in reply to Dydee]

I am really hungry when on prednisone it is so difficult to stop eating. My hubby is on it as well he copes better but he has still put the weight on and he is active. It’s just hard. Good luck love .

[HeronNS]

You know, I think I tried to donate a few months ago and I'm not sure the donation actually went through. Can't remember now. Usually the credit card converts the amount - for a fee over and above the exchange rate. Is it really euros? Shouldn't it be pounds sterling?