Perils of prednisone

[EmmaLaura]

Perils of prednisone

I have used prednisone extensively for PMR and GCA. Each health issue requires different decisions. I even had 3 days of IV prednisone for GCA. The side effects are horrific . Beware. I’m now on 2 mg of prednisone and dealing with prednisone for years. My back has fractured from the prednisone. I’m in constant pain and am treated by a pain manager. Not a happy tale.

[DorsetLady PMRGCAuk volunteer]

No, its not a happy tale.

Mine is slightly different in that because I was undiagnosed for 18months I lost sight in my right eye before GCA was diagnosed - and a high dose of Pred saved my left.

There are two sides to every story, and whilst the side effects of the drug can be very unpleasant, I wouldn’t go so far as to say horrific, it can also be a cause for good (as in my case).

[Hollyseden in reply to DorsetLady]

Yes we do all have a moan about pred, but when any of us miss a dose for one reason or the other, we realise how much we need it. A wonder drug....... Wonder why we take it then wonder how we would manage without it.

[fmkkm]

Hi EmmaLaura,

You said you have been on prednisone for years. Just curious how many years and how long on high doses? Also, did you get a dexascan in the beginning so you can compare how much bone loss there is before and after pred. Prednisone is a strange drug, it really affects us all so differently but is really necessary. Thanks so much for any replies!

Best, forward motion.

[EmmaLaura in reply to fmkkm]

High amounts of prednisone while being treated for GCA and having vision issues

I can’t tell you the amounts and how long. Lots , causing lots of side effects. My mission was to get off it. For a long time it gave me energy so I enjoyed that time and then wanted off. Very slow on getting off it as this site recommended. When I was dealing with back fractures, the pain was horrific for a year or so. Finally a numbing injection handled the pain and I found I could manage with aspirin - 2 a day after meal, then I could do 1 a day. The first week off pain meds, I didn’t think the ice, heat and aspirin would work. Then it worked.

[GOOD_GRIEF]

So sorry to hear you've had such a bad time.

It doesn't seem fair that so many of us do well, and others have it so hard.

I see from your lovely smile that you haven't let it get you completely down.

My best wishes that you are able to find some comfort.

[Hidden]

Ohhhhh EmmaLaura, I am so sorry... no this is not a "happy tale." I am so very sorry you are having to go through this.

[SheffieldJane]

We don’t really have any choice do we? I am sorry the effects have been so devastating for you.

[EmmaLaura in reply to SheffieldJane]

It is amazing how fast I bounced back - never looked back.

[EmmaLaura]

I thank you all for your good wishes. I hope for a better future. I think the conditions are burning out a bit but no proof of such. God Bless you

Emma Laura

[Hidden in reply to EmmaLaura]

Hi Emma we tend not to use full names here. I hope you feel better soon. Pain is the great leveller.

[EmmaLaura in reply to Hidden]

Thanks. Removed it

[SheffieldJane in reply to EmmaLaura]

You have a very fine name, but you can edit it out by using the “ more” button and edit. You never know who is looking in. 🌸

[EmmaLaura in reply to SheffieldJane]

Thank you

[Dream21]

I am so sorry to hear of the harsh side effects you are experiencing. Prednisone has been very hard on my bones that are severely weakened. I try to to focus on it since I still need to take a 3mg dosage. 21/2 years PMR, GCA

[Dream21 in reply to Dream21]

“try not to focus on it” oops.

[EmmaLaura in reply to Dream21]

I did self injections of forteo for 14 months. Good results: can open most jars, can get out of a chair , don’t need cane, can bend over to pick up paper ( not allowed to do that ). Before I could not do any of these.

PT and massage very important. I learned to relax my muscles. I’m only allowed to walk. I was a soccer ref in my 40s and exercised every day- advanced step aerobics. It was good to get to walk again. Remember to rest daily or your disease will arrange that

[Sandy1947]

Happy thoughts, gratitude for little things may bring some peace. So sorry about your back. I have severe osteoporosis and getting Prolio shot tomorrow. Developed a wicked pain on left side of my leg from knee to ankle. Seeing orthopedist Friday. Down to 3 mg Pred...thank G-d!

[bunnymom]

So sorry to hear of your difficulty. On this forum we understand. Of course what else is there to take to get relief? Hope some relief and comfort come to you❤️

[EmmaLaura in reply to bunnymom]

Thank you. Yes it has.

[Yellowbluebell]

No its not a happy tale but without it most of us would have no quality of life. I will take the possible risks and hope for the best.