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MaryFran
Posted Thursday, November 05, 2009 12:57 AM


 

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Well I haven't had a pity party for a long time and never on this forum. Last year when the bottom was falling out I had many here in the privacy of my home. Now I know I can turn to you guys for support and I really need it tonight! I'm trying to get off Medrol. Got to 4 mg and today decided I'd start skipping a day and just do the 4 mg on alternate days. My docs office thought that was an okay idea because I've been weaning down for several weeks. BIG MISTAKE! Tonight everything hurts from my head to my toes - literally! My toenails hurt! I went to a friends for a small dinner party tonight and cried while walking home because I hurt so bad. I haven't hurt like this since summer of '08 when all this hit the fan. Of course we had wine with dinner so I don't have the option of taking a Vicodin. My only recourse is to have more wine!

In addition to hurting, I have a very strange sensation in my ears -which actually started last night but I ignored it today and thought it would go away. I feel like I have ocean waves in my head. I'm not dizzy. My head does sort of hurt with a dull headache. My ears don't hurt. At the dinner party, I realized that everything anyone said had a subtle echo to it. Like two people were talking at the same time at a slightly different speed. Very weird. I had a terrible ear infection last fall or winter and that left me with a feeling of clogged ears for several months but had finally gone away. At one point the ENT was thinking she might have to put in tubes - like they do with kids - but I just ignored it until it finally went away. Now this! Really bugs me. Of course, with the ocean playing in my head, my hearing is not what it should be and I had to keep asking people to repeat what they said and to speak louder. I'm a mess tonight! I'll call the ENT tomorrow and I'll take 4 mg of Medrol for sure! I just hope things snap back to my normal self again - whatever that is since RA - seems to change on a daily basis!

Just need some TLC and understanding and maybe some ideas of what this is all about. Thanks guys. Don't know what I'd do without you since I live alone and hate to bother folks I love (although I know they would be there if they knew I needed help!) Night.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
Post #4256544
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Grandpavan
Posted Thursday, November 05, 2009 1:10 AM


 

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I have a pretty good idea of your problems but I haven't done quite the same thing. I started on 40 mg Prednisone, half in the morning and half at night. I was told to reduce the night dose 5 mg a week but keep the morning dose the same. That worked fine till I got down to only 20 mg and took it all in the morning. The following morning I couldn't even raise my head off the pillow to take my medicines. I did manage to take my medicine while lying down. My wife called the doctor and he said to go back up to 30 mg and when I reduced again just worry about the daily dose and not when I took it. Well, a few months later my RA medications really kicked in and I was able to get off Prednisone competely with no problems. However, that one day was a real nightmare for me. I hope you get things back in shape and have no further problems. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
Post #4256548
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Captex
Posted Thursday, November 05, 2009 1:18 AM


 

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Mary,

I feel so very bad that you feel so very bad. I truely feel your pain here in the wee hours of the morning. You deserve every bit of consoling words that are possible. I share your desire to wean yourself off of the meds and your desire to return to what was once a sense of normalcy.

We are all here for you. I wish that I could provide some insight to you. Instead please accept my prayers that tonight your pain will ease.


God Bless


captex

I'm off Prednisone! and off Bactrim, currently taking Atenenol, Albuterol, Glipizide, Lozol, NOMORE NSAIDS and trying to lose the 30+lbs that I gained recently from Prednisone. Just added Arava. Diagnosed with RA in 1982. Fighting ILD. I'm dealing with my Diabetes and I've only begun to truely understand RA.
Post #4256551
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Roger Mitchell
Posted Thursday, November 05, 2009 2:51 AM


 

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Mary sorry you are not feeling well. Get some good rest and hopefully in the morning you will feel better!

Roger
Post #4256573
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Bodak
Posted Thursday, November 05, 2009 3:32 AM


 

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Mary, this sounds very much like I was in the beginning when I was that bad I was in tears.
I could not move any muscle in my body without much pain.

I was dizzy to the point that I did not know if I was walking in a straight line.
Felt like I was walking sideways, just felt really weird.

I still suffer like this but no way as bad these days.
I would become disorientated under the lights in a supermarket, had to get out before I did something stupid.
RA has played havoc with my nervous system, things are worse when the RA raises it's head more than normal.

Are you under stress at the moment, I find stress a very big factor in how well I control the RA.
You have come across to me as a sensitive person and could be more prone than others to stress.

If I think I'm heading down the wrong track I up my dose of Pred (3mg) to about ten untill I bring it back down again.
I hope you can get this under control.

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
Post #4256584
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Bekah M
Posted Thursday, November 05, 2009 6:27 AM


 

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Hi Mary,
I can't take pred so I have nothing I can compare it to for you. I just wanted to send my support and my love and pray you feel much better soon! I know that stress has me in a mess right now and none of my meds seems to be working in their normal ways. I know the sleep medication is making me more awake. Stress is such a bad thing!

I pray you feel better really soon..I hate to hear that you cry from your pain!....I will cry with you!

MUCH LOVE
BEKAH


Plaquenil 600mg., Metoprolol 200mg.,, Hydrocodone 10/500, Elavil 100mg, Lisinopril 20mg,Ativan, Omega Complex, Milk Thistle
Primary Lupus and SecondaryRA, Fibromyalgia/CFS, Raynauds, Sjogrens...
Post #4256610
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Jay in Sarasota
Posted Thursday, November 05, 2009 7:43 AM


 

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Hi Mary,
I'm assuming you mean prednisone when you say medrol? I just posted a link below to a thread I started when I finally got off prednisone which seems like it was years ago - it was last April. From my experience I'd say going from 4mg every day to only on alternate days would be certain disaster. I'd go from 4 a day to alternating between 4.0 and 3.5 a day for two weeks. Then I'd try 3.5 a day for two weeks, and then alternating 3.5 and 3.0 for two weeks etc. My technique takes forever but I finally got off the stuff this way (Obviously I'm not a medical professional, but I think we all know none of us are here.) But one way or another I hope you feel better.
Jay
http://community.arthritis.org/forums/Topic4194022-1831-1.aspx
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Tommy4
Posted Thursday, November 05, 2009 8:32 AM


 

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Mary,

I dont have any answers as I cant take predinose either but I do hope and pray that you are feeling a little better this am.

Tommy
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Great Granny
Posted Thursday, November 05, 2009 8:43 AM


 

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Hi Mary.

I'm sorry you're having a rough time right now. I sometimes get that "water-in-the-ear" feeling. It doesn't last long, though. I have no idea what it is. It happens so rarely that I forget to mention it to my doctor. I have to start writing stuff down.

I'd like to be able to give you the benefit of my experience, but I haven't had to wean off anything yet. That's the great thing about this site: what one hasn't experienced, another has. You came to the right place with your concerns.

You are always so upbeat and offer so much encouragement to others. Don't feel bad about needing a little of that for yourself. I'm praying that you'll feel better soon.

Hugs and prayers.
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Gramma
Posted Thursday, November 05, 2009 8:46 AM


 

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Hi Mary,

I can relate! I was on 4 mg of Medrol for over a year, and it was awful trying to get off.

Finally I cut up the pills into quarters, and took 3 quarters for a week, then 2 quarters for a week or 10 days, then one quarter for 10 days, then alternated 2 days at 1 quarter, one day without, then one day on and one day off, until I could finally get off the "####" stuff. I think it took over two months before I was off. Then I had the pred rebound for 2 weeks with a full blown flare, nearly as bad as when I was first diagnosed, but it got better day by day. I stuck it out because I was motivated.

Now the ear problem may be something else entirely. I've had an ear infection that caused those symptoms, and I recommend that you see your primary doctor or clinic. They will probably see some swelling there, and you might need decongestants and antibiotics.

Hope you will be feeling better soon.

Hugs & Spoons,

Gramma Ellie
Post #4256687
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Pam 14
Posted Thursday, November 05, 2009 8:50 AM


 

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Mary - I'm so very sorry to hear your going through such a rough time! You are a very strong woman and you'll get through this. Just know we're here, we understand, and I'll be holding you in my prayers today. Pam
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SusanOnWhidbey
Posted Thursday, November 05, 2009 9:03 AM


 

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Mary, You've been at 4, and doing OK????



Try something different: instead of skipping a day, get a pill splitter from the pharmacy and go to 3 and a half. Give that several days. If you're still hurting, go back up to 4.



If 3.5 is still OK after a week, then creep down to 3. Keep repeating the process til you're at the bottom of the mountain.



The thing to keep in mind is that the last 5 mg are the very worst to get through. Your adrenols are getting kicked into action and they don't like it a bit. So take it nice and easy.



Check in often with us so we know how you're doing. And please go ahead and vent or do anything else that helps. Take as long as you want with this weaning process. Sooner or later you'll be free of the stuff (except for short term emergencies) and we'll all celebrate!

SusanOnWhidbey
Post #4256701
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Pam3
Posted Thursday, November 05, 2009 12:15 PM


 

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Mary,

I hope you're feeling better today. I know how miserable this can feel. Remember that it will pass. Until it does, feel free to vent as much as you need. We're here for you.

Take Care,
Pam
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Polly Sue
Posted Thursday, November 05, 2009 12:33 PM


 

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Mary,

So sorry to hear that you are feeling so poorly. But the support here is heartfelt! We are so lucky to have each other.

I have no advice for you I have never been on predisone for more than 8 days, but from what I have read here it can be a beast!

Take care of yourself - hope you are feeling better soon.

God's blessings and my hugs

Susan
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Barbara Schwefel
Posted Thursday, November 05, 2009 12:41 PM


 

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My Dear friend Mary,
I wish there was something I could do for you.I will definately send buckets of prayers up for you to feel better!!Please remember that we all LOVE you here and if you need to vent bring it on!!!We are all right here with you.LOVE,HUGS, and PRAYERS.

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
Post #4256906
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MaryFran
Posted Thursday, November 05, 2009 1:02 PM


 

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Oh, thanks one and all for all your support and ideas. Jay - I read your older post and that makes much more sense than what I was doing. The Medrol tablets that I have been using are 16 mg, scored so that I can take 8, then 4. I looked on the web and found that they also make one in 4 mg, scored so that I could taper from 4 to 2 to 1. I've called my rheumy's nurse and asked if they could get me a prescription for that size. Meanwhile, I'll keep taking the 4 until after my next Remicade on the 13th. I'm still a mess this morning - finally took a Vicodin at 3:00 a.m. and got a little sleep. Have a hearing test set for 4:30 and the ENT nurse is going to try to squeeze me in to see that doc today. Seems like when one thing goes haywire everything does. Just took another Vicodin and hope that will take the edge off but not make me too loopy to drive. I have a friend who has offered to give me a ride if I need one. Thanks again for all your support and ideas.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
Post #4256937
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Grandpavan
Posted Thursday, November 05, 2009 1:56 PM


 

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Jay, Medrol is Methylprednisolone, a close relative of Prednisone. It does about the same thing but some doctors prefer it for reasons I have never tried to understand. From what I read here I see them as being used in much the same way. God bless.


Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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Bodak
Posted Thursday, November 05, 2009 4:19 PM


 

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Thanks GPV, I did not understand that they were the same or almost the same....

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
Post #4257110
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Grandpavan
Posted Thursday, November 05, 2009 7:21 PM


 

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OK, I got curious so I looked up the answer. The body turns Prednisone into Prednisolone, and Prednisolone is more friendly to the liver. The link is not to a recognized source of medical advice so take it with a grain of salt (even if you are on a salt-free diet). God bless.
http://answers.yahoo.com/question/index?qid=20080202155355AAsgFGY


Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
Post #4257283
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MaryFran
Posted Thursday, November 05, 2009 10:36 PM


 

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Yes, Medrol is a steroid like Prednisone. I started on Prednisone and was having some problems so they switched me to Medrol - can't remember what the problems were but like everything else with me they were probably weird! On Jay's advice, I looked into Medrol in another dosage and found one for 4 mg that is also scored. My doc's office got me a new script today and now when I am ready to try to wean again I can go from 4 to 3 to 2 to 1 - much better I guess. Didn't realize it came in 4 mg. Thanks Jay for the idea! Pain is better tonight - I guess because I took the 4 mg this morning. Plan to stay on that until after the next Remicade on the 13th. The hearing issue is still an issue. Had a hearing test today and it had not changed since the last test but I still have the ocean in my head. Have an appt. with the ENT next Wednesday. Hope things settle down real soon here! At least we're almost to the weekend and I can hibernate and get some rest. Thanks for your support.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
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