Convince me not to go back on prednisone....PLEASE!

Thanks so far.  I don't have RA, I have osteoarthritis especially in knees.  I used to take Motrin but hesitating to take it with UC that is not in remission.

Refusing sounds good to me.  Although I feel good taking it - I sure know it is not doing me any good.  As far as Remicade - the new specialist told me I am too old and at too much risk for Remicade.  BUT - he prescribed the Cortifoam and Anusol twice to three times a day.  Had to quit those due to side effects (more bleeding and swelling, sore inside and out).  He may reconsider Remicade or going back on prednisone but both scare me for sure!

ElaineNY

I am pretty sure my doctor in Albany who has been treating IBS/IBD/Crohns for over 30 years will have some idea and more things to try.  Thanks for all the support.  I took prednisone for nearly 6 months but very low for three months.  As for arthritis I had all the pain and bone on bone way before UC. 

As for the knee replacements - no go until I can say I am in remission or feel I have control without tons of Imodium, etc.  I still have daily bleeding/mucous/nausea but no diarrhea and little urgency.  I do have to be really careful what I eat because of IBS. I know that I could not handle knee replacement AND UC flaring.  It has been over a year like this and only time I did not have bleeding and felt "human" was on 40 mg down to 20 mg. of prednisone. I know my bones are ok so far but I do fear necrosis.  On top of everything else I cannot tolerate narcotics for pain.  I can tolerate a few days of Motrin that is why I asked about it.

Calling both doctors tomorrow and see if I can get one to answer me.  My favorite NP quit her job so no one to really trust right now.  Albany doctor said I could see him anytime before my October appointment if I need to - I just might go early but it is 150 train ride and not cheap to stay over, etc.

ElaineNY

I remember that one time I took Prednisone and got off of it. I felt like crap in every regard and it took some weeks before I felt myself again. I have no problems with arthritis, but after Pred my joints very aching like crazy, i was stiff, I cried all the time and had tantrums. It is really like a Prednisone hangover that takes some time to get over with. But I am truly sorry for all the health problems you have without the Pred. I personally refuse to take Pred ever again myself. First, it didn't do anything for me and second, it scared me how much mind-altering it is. And having a moonface still three months after being off Pred does prove to me that this drug is powerful in mean ways.

Exercise is a good idea, just as much as you can handle and something that you like. Have you tried very gentle yoga? It is fun and simple and very beneficial for warming up the muscles and joints and get moving. I enjoy taking very long walks with my dogs (sometimes brisk, sometimes just strolling) if I don't feel up to anything else, because I am too achy or too tired or too weak. If you don't have a dog, you should get one :) - provided you have the space, the time, the money and the permission from the landlord if you rent your home. Dogs make you happy, they are something to care for, they depend on you and make you feel good about yourself. I have a chihuahua (well, he is 95 % chihuahua and the rest is mini pinscher) and a Pembroke Welsh Corgi puppy. I feel miserable without my dogs, but I am getting OT here. Maybe your neighbor has a smallish dog that you can borrow for walks? Sorry for getting carried away :).

So your doc took you off all your meds? Do I remember correctly that you took 6MP?

I wish I could help you, but I don't know quite what to say other than i hope you feel better soon.

I like the expression "prednisone hangover".  However, I felt so good on it I guess that is why I am wishing I was back there.  I still have a little moonface but don't care.  As for emotions - not bad - I take Xanax for anxiety and that helps me sleep also.  I just could not find anything much wrong with prednisone until I tapered off.  Yes, I took 6MP while tapering but blood tests showed that 50 mg. was not therapeutic and more made me very sick.  EVERYTHING makes me very sick - worse than UC ever was, especially mesalamines - even enemas and foam and suppositories, etc.  The new specialist took me off 6 MP and put me on rectal meds only.  When he found out what they were doing to me he told me to quit and consult my regular GI doc.  Well, my NP quit and I cannot get the doc to call me.  Not sure who is in charge of my case now.  I will try to find out this week.

As for walking - barely can get around with a cane.  I never get my housework done.  We do have a little dog and love her to death. She is part poodle and shih zo.  I can't handle her because of the pain, etc.  I have been due two knee replacements for 2 years.  My husband takes her out.  Stretching does help me some but bone on bone is no fun.

suebear - nothing against you but you sound exactly like my first gastro doc - the one near me.  Every time he gave me new medication he told me I had to "buckle down" and tolerate the side effects to get to remission.  SORRY - it got worse everytime - bleeding and pain, etc. When the medications are worse than the disease - no way!! 

I will find out what one or more doctors say before I make any decisions.  In the meantime, eating Tylenol, Imodium, pepto bismal, and sitting a lot! Vacation next week should be fun - NOT!

ElaineNY

Elaine,

After 2.5 years of being on varying doses of prednisone I had the exact withdrawl symptoms you are descrbing and no how intolerable it can be.  This is one of the "after" effects of prednisone that is rarely talked about and what, I think, makes it a scary drug.  The short and long term side effects can be awful and not discovered until AFTER one goes off the drug.  I got through my pain by continuing to move and it finally got better.  Stopping movement made the pain worse.  Hang in there.  Maybe talk with a rheumy to see if there is something to tide you over with the arthritis that is non-steroidal and non NASID.

My withdrawl from pred 8 years ago has made me very resistant to take it ever again, even for the short term.  I had a very bad case of poison oak a few years ago but refused to see a doctor because I knew pred would be the drug of choice and I wasn't going there again!

Sue