Listen to your body when tapering! | Arthritis Information

 

Last week I had posted that I wasn't feeling well along with fatigue and was going to call my rheumy.  Well, I didn't call her because I thought I was feeling better.  Should have called!  By Saturday I was feeling worse but thought I'd hold out until Monday.  Sunday I was feeling so weak with some confusion so went to Urgent Care and was put through a battery of blood, urine & chest x-ray testing.  The methotrexate warnings tell you to seek medical attention with any sign of infection or fatigue.  I was feeling feverish but didn't have a fever and couldn't get enough sleep.

russellcat

No one on this site or the others I visit, will ever say to you "I told  you so".  We are all on a learning curve and we all learn at a different pace.

You only joined in April 2010 and its only July 2010  - not long enough to appreciate what PMR can and does do.  

I was a little surprised to see you where on methotextrate, as the people I know who started on Metho, did not start till they were steady on 10mg.  And then an increase in the metho and a drop in the steroids, but I gather quite slowly.

Maybe you should have an ask around and find who else is on Methotextrate and see what they are doing.   I will ask my friend who is on metho exactly what her drop and increase was and is.

Mind remember in all this, that metho is not a cure either  just like the pred is not a cure.

Hope  you keep well.


Hi there,
I have been feeling worse, as well, for the last couple of months. In May, I tapered from 10mg. to 9 mg. every other day for 2 weeks and then down to 9 mg on June 9th. I was supposed to start another taper to 8 mg. of prednisone at the end of June but my blood tests showed that CRP and SED rates were quite elevated. My rheumy called and told me to just stay at 9 mg. for another month to see if my body could adjust to that amount. I'm supposed to redo my blood tests next week to see if the numbers have come down.

I just feel awful though. I barely have energy to sit in my chair and read, my shoulders and hips hurt and I feel achy all over. Just wondering if I should call my rheumy and go back up on the prednisone or try to tough it out. I've tried so hard to lower my dose, that I hate to go back up. I worry about the side effects. But I also hate feeling this way. It's summer and I'm off work. There's so much I'd like to be doing.

Reading russelcat's post made me wonder if I need to look into upping my prednisone dose. I'm glad you're doing better russelcat. Sorry that you had to go through what you did....

Any ideas for me?

JannieI  hope  someone can  clear  something up for  me  I'm still new to PMR  and the website and I have been hearing a lot about  when you are tapering the effects you may be feeling  could be from the prednisone and not the PMR  resurfacing   can someone out there clarify this for me?  thanks  for all your input! Hi! Hi All

I would add one thing and one thing only to MrsE's advice.

Methotextrate is not a cure either.  It is to enable you to come off the steroids, then you are still on the Metho until the pmr burns itself out and it has a mind of its own.  I checked with the only person I know personally who is on Metho,  she is now down to Metho once a week and 1 mg of steroids and she tells me she is struggling, but is visiting her Rheumy at the end of the month, as sometimes when the body has got used to the pred it does not want to give it up  - hence it mimics the symptoms.   It may be she has to go back onto 1 or 2mg.

I know its a very personal choice, and one I had to make when offered Metho.  My answer was No.  And my Rheumy gave up when I pointed out to him - that both  had side effects, but I did like my liver a lot as it re-generates.

Steroids with all their faults have been around for a long time  - metho is a newcomer to the block as far as I am concerned.  But then who I am to know what's best, I am just somebody with an auto-immune disease one of the 800 orphans.



Hello again,

I appreciate the input of both of you, Mrs. E and Mrs. UK and everyone else out there.   You've lived with and researched this disease far longer than I have. I am in my 15th month of PMR. Sometimes I feel like I'm handling things well and then there is now, when I'm confused and hurting.

I wanted to clarify that I am in no way as much pain as when my PMR began. At that time, I couldn't get out of bed, lift my arms, legs, etc. The pain was so severe!   Now I'm still in some pain, but more of the achy variety. When I started on prednisone (July of 2009, I was taking 40 mg), it was a miracle! No pain whatsoever and I was a bundle of energy. I repotted all my houseplants, planted a garden, and rode my horse. Now, however, at 9 mg., I just don't feel well. My joints hurt, but, really, it's tolerable. I just tend to the bare necessities and spend a lot of time reading.

I'm just confused. Are we to take enough prednisone to feel like our "old" selves, energetic and free of pain? Or is what I'm going through now, my new "normal". That's what I can't figure out. If anyone can shed some light on this, I'd so appreciate it. I know we're all different, and our tolerance to pain is different, as well. My quality of life is not what I'd like. I spend a lot of time telling myself how much worse it could be and trying to appreciate the mobility that I have. But still....

Wishing you all pain free days...
Gentle Hugs,
Jannie
montanawomen

I can only direct you to this website, www.pmr-gca-northeast.org.uk.

The site contains various of information, from both patients, medics, dieticians and exercise.  

The last is important.    You must keep moving - the exercises where devised for PMR patients.   The muscles will waste if you don't keep them moving.  When you read people's stories, swimming, aqua-aerobics, walking, even just for 20 minutes per day (although up to 45 is the recommended).  Some people have tried and are attending Nordic Pole walking as they find this helpful.  Other people can use Power Plates, Yoga and gentle exercise.

But the old adage,' there is no gain without pain' is a nonsense and no longer applies.

Remember I am in the UK and our NHS runs physio classes and also some charitable organisations run classes on various exercises.  I don't know what is available to you in the US.

But you must try and keep moving  - the other old adage, is 'use it or lose it'.

I could only walk about two car lengths, I can now walk down a supermarket aisle.  Mind I always look and see if a chair is available at the other end.

The aim is that the steroids should make you feel comfortable, not in tolerable pain.

By the way, TENS machines can help as well. They are not expensive in the UK.

A mate of mine, puts hers on both legs before she starts her walk, when the pain gets too bad, she switches it on and makes it back home.   Worth a try.

mrs UK
I am in agreement with the keep moving part.  I tend to be a little antsy anyway and have a very hard time sitting still.  Montana, I know exactly how you feel.  I understand that tapering off the steroids is important (in moderation) but is being able to walk down a supermarket aisle, as mrs UK states as good as it gets.  By the way Mrs. E, I think you may be right on in your assumption that my body was going into crisis mode.  I was feeling very bad and felt as if things were going to get worse fast.  That's why I went to Urgent Care on Sunday and didn't try to make it until Monday.  My rheumy did call me back and I am back on 12.5mg daily until I see her this coming Tues.  She said the depomedrol inj. should last about a week also. russellcat

Can I just tell you, that with pmr, when something else goes wrong  (ie I had a kidney infection one year and then psuedo gout the next) it takes you longer to recover than you would have done if you had not had PMR.  Your ESR, CRP and white cell count and everything other count are shot to hell for a few weeks as well.   Don' worry and don't stress  (stress makes it worse)  - just go with the flow, listen to your body and do what it tells you to do  - don't push - pushing just does not work. Listening does and that it the hardest part to learn.

PMR whilst not life threatening is life changing, it  destroys the quality of life you had before and you have to learn how to get back as near as possible without suffering.

Good Luck on this strange journey we are all taking, even though we don't want to.
Jannie, your recent posting could have been written by me, except that I've been struggling with PMR for "only" 6 months.  It is frustrating when our only consolation is that it could always be worse, but I guess we do have to hang onto that.  The tapering is very difficult and clearly not a "one size fits all" deal.  I wish you (and all of us) the best, as we progress toward the end (hopefully) of this PMR journey.Hi Russelcat, Boy....I feel for you.   I think our whole being becomes involved with getting off the prednisone, and somehow we do not notice our life slipping away. As few people understand, except those on this web-site, it becomes a journey through pain, depression, medication, alternate therapies etc.

I live in Sydney, and myself and another lady in my suburb,who both had PMR diagnosed at age 55 and 53 respectively, were both on Methotrexate for most of the 4 yrs. She on oral, myself on injection. It is used as steroid sparing drug. Initially blood tests for liver were weekly, then fortnightly and then monthly.   You can not drink alcohol, but is that such a  problem?

She went off the meth first , then the pred, and after 4 yrs, just some mild analgesic sometimes.   I went off the meth after 2yrs, had a real decline(got worse) in PMR and general health, then after some mths restarted meth until this Feb. Liver was as fine as it could be tested through blood tests, and i am now on pred 2 1/2mgm.

When I asked rheumy to cease meth, I felt i was really good PMR-wise but was feeling tired and nauseated on meth day.  This was not always the case, but seemed to increase as i got well.  He asked me what I had learned through this PMR  and my answer was......
to contact him re dosage of pred etc, when i felt my life was going in a hole. To trust him, and not think he was this bad man just trying to get drugs into me, and to realise that if we cannot participate in life then our dosage is not correct.

My aim in health was always high as i did triathlons, swim squads, walked for hours prior to PMR.  Now I have resumed swim squads, deliver the local paper  5 days a week, continue with yoga, walk my dog......BUT  if I have a big day emotionally or physically , I  definitely feel heavy and slow the next day.......BUT  nearly all days I have a smile on my face, unlike those previous years.    Good Luck  

This web-site helped me , when even husband did not understand. Hi guys! Hello all,
This is becoming a really long thread, but I did want to update you. After reading what you all had to say and spending some pretty teary days, I called my rheumy. I think I finally understand (for now at any rate) that I really don't need to suffer with this! I'm not one to lay around and that's what was happening. It sounds like most of us were pretty athletic before this hit us.

So long story short, my rheumy upped my prednisone dose. I'm now back to 15 mg/day for a month and then start to taper again. I'm feeling more like my old self. This time when I taper, I won't put up with as much pain a I have. One of you said that if you're not comfortable after a week, then the lower dose isn't high enough and to go back up. Someone PLEASE remind me of that in the future!

Prednisone is not the enemy. It helps us get through this ugly disease.

Wishing you all pain-free days,
Gentle Hugs,
Jannie
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