Almost tapered off the Prednisone!

[MikeG-2012]

I've been on a long taper off of the pred and I am on track to be off by September 1. I can't wait.

One of the problems now is that I found out that I have Osteoarthritis in my knees. The pred was masking it for the past 2.5 years. I'm on arthritis med #2 to try to give me some relief. My knees hurt so bad I have to push myself up from a seated position. Going from sitting to standing and going up/down stairs are the absolutely worst thing. I'm glad the college is ADA compliant and has elevators in every multi-level buildings!

[cjhnsn29]

I agree that tapering off the Prednisone is awsome! I went from 60 mg down to .5. It's awsome I hated the side effects. I am now taking methrotextate which has been working to bring my SED rate down.

[Debbie C]

That's great to hear Mike. Yea that is the problem with gettin off the pred,you find out all the other things wrong with you that you didn't know you had. Good Luck !!:thumbsup:

[Jaha]

Congratulations to you, that is quite an accomplishment. Sorry that you are still having to deal with joint pain, is it a side effect from wegs or just the Arthur. I hope that you continue to improve everyday and that your pain settles down.:hug3:

[MikeG-2012]

Sorry that you are still having to deal with joint pain, is it a side effect from wegs or just the Arthur.

That is too FUNNY, my brother is Arthur and he definitely is a pain, but I can't blame my arthritis symptoms on him!

Thanks for the laugh!

[MikeG-2012]

Update:

Still have the joint pain and weakness in knees and legs, but the good news is that as of September 1, I am off the prednisone!!! I've already lost at least ten pounds over the last three months that I've been tapering off!! Only 50-60 more to go to get back to where I was before all this started over 5 years ago. UGGHHH!

It feels good to be off the pred, after being on it for the past 30 months!! YEA!!

[Jaha]

That's great news, all the best to you!:thumbsup:

[Jayne 14]

That's amazing week done !!


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[gilders]

Great to hear you're off the pred and the weight is dropping off.:thumbsup:
I'm now down to 10mg/day and my left foot is begining to be really painful again (I have rheumatism, morton's neuroma and mulder's click in it). I'd rather put up with the left foot issues and get rid of the pred side effects though.

[Allisonquast]

Yeah! Glad you are off the pred! Colin is down to 1 mg, he hasnt lost any weight yet but he hopes once completly off it. A few aches and pains have resurfaced as well. Hes so excited to be off, its been up and down , he thought 2-3 was rough. Here's to you both staying pred free!

Ps he made up all the motorcycle miles he lost when diagnosed this summer!

[Debbie C]

Congrats Mike...lets hope you can stay off it for a very long time ( a lifetime ) Are you taking anything else now for the pains ?:thumbsup:

[MikeG-2012]

UPDATE:

I've been completely off the pred since September 1, and am still hurting. Knees and legs are just weak. I have to push myself up from a sitting position, and that hurts like ____!! It is frustrating to have legs that hurt that bad every morning!

The official diagnosis is "prednisone myopothy". (link to a description) (http://www.vasculitisfoundation.org/mcm_faq/what-is-steroid-myopathy/) My Rheumy said this could take up to 6 months to get better. I'm not at all thrilled with that possibility. It has been less than a month and, most days, I am ready to get back on the pred just to get some relief--even with the given side-effects.

I guess I am just extremely frustrated. I was supposed to be getting better not being on the pred! ARRGH!!

Thanks for listening to my ranting and raving!!

[MaxD]

Mike, Good for you for getting off the prednisone! Thanks for the link on steroid myopathy. I've tapered down to 7.5 now (from 75 in March), and starting to feel pain in the upper legs and getting out of breath climbing stairs - now I know that it's expected and why! Going down to 5 hurt a lot and had me exhausted, so went back up and now tapering more slowly, hope to be prednisone free by mid-December. Thanks to you, I'll have realistic expectations for several months into next year.

[MikeG-2012]

Mike, Good for you for getting off the prednisone! Thanks for the link on steroid myopathy. I've tapered down to 7.5 now (from 75 in March), and starting to feel pain in the upper legs and getting out of breath climbing stairs - now I know that it's expected and why! Going down to 5 hurt a lot and had me exhausted, so went back up and now tapering more slowly, hope to be prednisone free by mid-December. Thanks to you, I'll have realistic expectations for several months into next year.

Yea, sorry to give the bad news to others, but I thought someone might find my rantings valuable! (-8 LOL!

The ULTIMATE SIDE EFFECT of being of the pred is that I've lost 14 pounds (with about 60-80 more to go)! That IS good news! Yea!

[Pete]

I'm down to 3 mg again. When I was here 2 months ago, creatinine crossed over the upper limit of normal and gave my wegs doc some pause. Been re-tapering at 1 mg/month. Creatinine is still fluctuating in and out of normal, but no other signs of active disease. I'll see the wegs doc on 10/16 and see what she says. Once I'm off pred and stable, I'd like to try getting off mtx.

[gilders]

Hi Mike,
Although it's not great news that it may take months for the effects of prednisone myopathy to disappear, it's better than the pain being caused by something that isn't going to subside.
Hope that came across as positive thinking and not an uncaring attitude on my part.:sad:

Keep up the good work with loosing the weight. Can't wait until I'm off Pred.

[Jaha]

Mike,
You have done an amazing thing. I'm sorry that you are having such pain, that really sucks. I can't seem to make it to 10 and stay there with out a lot of pain or flare. I am wishing you all the best for getting thru this, does Tylenol help your pain at all? Maybe it won't go on to much longer, Congrats on the weight loss. Keep on keep'n on!

[annekat]

I did not know about steroid myopathy. Yikes. Good to know about it now, I guess. But congrats, Mike, on getting off the pred.

[Geoff]

Congratulations Mike, just inspirational!! In 6 years I have never got below 5mg so your story and information are spuring me on, thank you :thumbup:

[MikeG-2012]

Hi Mike,
Although it's not great news that it may take months for the effects of prednisone myopathy to disappear, it's better than the pain being caused by something that isn't going to subside.
Hope that came across as positive thinking and not an uncaring attitude on my part.:sad:

Keep up the good work with loosing the weight. Can't wait until I'm off Pred.

Yes Gilders, I did understand your positive thinking. Thanks, I can use a little of that since I am starting to lose mine after more than a month of PAIN and weakness. I am trying to be positive, and today, I feel the best I have in a month. Let's hope today is a turning point!

[MikeG-2012]

Mike,
You have done an amazing thing. I'm sorry that you are having such pain, that really sucks. I can't seem to make it to 10 and stay there with out a lot of pain or flare. I am wishing you all the best for getting thru this, does Tylenol help your pain at all? Maybe it won't go on to much longer, Congrats on the weight loss. Keep on keep'n on!

I still have an Rx pain killer that works a little better than Tylenol. (-8 But, yes, it does help occasionally! Thanks for the support!

[MikeG-2012]

Congratulations Mike, just inspirational!! In 6 years I have never got below 5mg so your story and information are spuring me on, thank you :thumbup:

Hang in there Geoff!! It is possible. If this continues to be a PAIN in the legs, who knows, I might have to go back on come low dose...

It is possible to get off the pred, there are just issues that one has to keep fighting to stay off of it. For me, that's the leg pain and weakness. I hope I can continue to endure, and get better soon!

[Jaha]

Keep on keep'n on Mike. You are being very courageous dealing with the pain and weakness. If the pain gets to much, don't feel like you failed if you have to go back on a small dose. Sometimes we tend to beat ourselves up, worse than we already are beat up from this disease. Wishing you all the best for relief from the pain.

[MikeG-2012]

Keep on keep'n on Mike. You are being very courageous dealing with the pain and weakness. If the pain gets to much, don't feel like you failed if you have to go back on a small dose. Sometimes we tend to beat ourselves up, worse than we already are beat up from this disease. Wishing you all the best for relief from the pain.

If this continues, I may have to break down and ask to go back on the pred, but darn it, I AM OFF IT NOW, and I want to stay off it!! (-8

I have two more RTX infusions scheduled for November, so I'll see if I can stick this out that much longer and see what the RTX does, and if it helps any.

Thanks for the words of encouragement Jana!

[MikeG-2012]

Update:

I'm still off the pred, and still hurt all over.

Good news is that I've lost almost 30 pounds since the beginning of August. I'm starting to see the old me in the mirror in the morning. I missed that person! I startled a saleswoman from an A/V furniture company when she came to my office this week. Her head snapped back, gave me the "up-down" and said, "...you've lost a LOT of weight!" Last time she saw me was in June, when I was at my heaviest weight throughout this whole process. It's nice to see people's reactions like that. (-8 Puts a spring in my aching step for a few minutes anyway.

I ave 2 more RTX infusions scheduled for the last part of November (6 month intervals), so I am looking forward to see how I will feel after those.

[Jaha]

Good for you Mike, so glad that you are seeing the light at the end of the tunnel. I wish you all the best with your next RTX infusions, maybe that will take that last wave of pain away for good.

[MikeG-2012]

Good for you Mike, so glad that you are seeing the light at the end of the tunnel.


Not too sure that it light at the end of the tunnel, or the tunnel getting smaller...


I wish you all the best with your next RTX infusions, maybe that will take that last wave of pain away for good.

Not sure that is going to help with the joint and leg pain, but let's hope so! (-8

Thanks Jana!