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Thursday, November, 12, 2009
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Starting Arava again today. Missing my high dose Prednisone.

Brad
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I have had foot and hand pain forever, but last year the pain went...

Brad

Tuesday, May 05, 2009
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I started Arava a few weeks ago, and 3 days later came down with Pneumonia. I think I was already losing the pneumonia battle before I started the Arava, and my RA doc agrees, but it still makes me nervous to start it again.  While I was in the hospital they stopped the Arava and upped my P...
  1. Prednisone
    Jeff
    Wednesday, May 06, 2009 at 03:22 PM

    Hi Brad,

     

    I hated prednisone for years because my wife took it for her ashma and she hated it. I didnt like her much either when she was on it. She only took it in step down packages a week at a time usually once or twice a year. I only take a small dose every other day with the sulfazine. I am looking at haveing to move on to the methylytrexate after this week. The thing that I do know is that the presnizone is a steroid and while the immidiate effects are wonderful the long lasting affects on you body can be deadly. It can affect your organs in an adverse way if taken in high doses too long. I hope you feel better and the new medicine helps.

     

    Jeff Kirby

    Reply
  2. Prednisone
    Josephine
    Thursday, May 07, 2009 at 11:50 PM

    Hi Brad,

     

    People seem to vary widely in their response to prednisone.  Some people feel good because it relieves their symptoms with few other noticiable side efffects short term, while other feel terrible - agitated, irritable.  I can't imagine taking 120mg a day.  Wow!

     

    I was on 40 mg per day when I was first diagnosed and I couldn't sleep at all I was so jazzed up.  I went from more of a OCD type person to someone with the attention span of a two year old with ADHD.  The (in hind sight) hilarious thing was that I was teaching a new class of students at the school where I used to teach.  The new class thought that I was a lot of fun but a bit looney, and normally I am a pretty serious person with a tremendous ability to focus.  Luckily as we weaned down the pred I returned to closer to my "normal" self, else I think that my students would have been entitled to a return of their tuition!

     

    I have a love/hate relationship with prednisone.  It relieves my pain and like you say, I can feel almost normal on it in terms of moving easily and free of stiffness.  The thing is, it has a lot of nasty side effects if you take large doses long term.  It can worsen or bring on high blood pressure and high blood sugar.  It can also cause cataracts.  For these and other reasons, docs try to use only as much as necessary, and either wean people off of it completely or down to a low dose - 5 mg or less.  Its often used as a "bridge" therapy until other slower acting DMARDs can take effect for the long term managment of RA.

     

    One big problem with prednisone is that it can be hard to get off of the stuff.  After being on it for an extended period, the adrenal glands that normally produce cortisol shrink down and it can be hard to get them back up to speed producing enough cortisol to take the place of prednisone.  And the weaning process itself can leave a person feeling tired and achy.

     

    A great book for anyone on prednisone is  "Coping with Prednisone:  It May Work Miracles but How do you Handle the Side Effects?"  Its been out for a while now, I found it at my local public library.

     

    Best Wishes.  I hope you feel better soon as you recover from the pneumonia and the Arava starts to work.

     

    Josephine

     

    Reply
    re: Prednisone
    Brad
    Friday, May 08, 2009 at 12:04 AM

    Thank you Josephine! Lots of good info, I will look into that book. I don't sleep well at all since I have been on the pred, but it was worth it to me. I understand it may cause side effects, it was just so worth it to feel normal for awhile. I am hoping the Arava helps, we are talking biologics next month too.

     

    Thanks again.

    Brad

    Reply
    re: re: Prednisone
    Josephine
    Friday, May 08, 2009 at 02:30 PM

    Prednisone in itself is neither good nor bad.  Its how its used that's important.  Its a very powerful medication and needs to be used wisely and judiciously.  Its fast acting and is great for knocking inflammation down, and its really important to have a med that can do that.  Uncontrolled inflammation is not only miserable, its damaging to the body.  So by all means, take the pred as prescribed when its needed, and then wean it down slowly in consultation with your doctor.  Most docs have a tapering schedule that they like to use, but that schedule often needs to be adjusted so keep in contact with your doc if your inflammation returns.

     

    As far as the side effects of prednsione.  Yes, there are many and they can be serious, but the important thing is to be familiar with them so that you can monitor your body for symptoms and report in to your doctor.  Many of the side effects can be managed and if caught early they won't cause the degree of problems that they might otherwise.  For example, if you start to experience stomach pain, protective meds for the stomach can be prescribed.  Insulin or high blood pressure meds can normalize blood sugar and blood pressure, bisphophates can protect bones from osteoporosis, etc.  The side effects also tend to be related to the total dose of prednisone over time, so thats why doc try to minimize the use of prednisone to just what is necessary to control inflammation. 

     

    Boy, can you ever tell that this RA-sidelined nurse misses her work?  Sorry to go on and on.  But I hope the info is helpful.  Its been hard won through a combination of my professional training and own experience with RA.  Wink

     

    Josephine   

    Reply
    re: re: re: Prednisone
    Brad
    Friday, May 08, 2009 at 02:34 PM

    Josephine,

    Thank you very much! I really appreciate the info!

     

    Brad

    Reply
  3. Untitled Comment
    Lene Andersen
    Friday, May 08, 2009 at 12:16 PM

    I'd suggest a compromise - talk to your rheumatologist about upping the prednisone a little to bridge the gap until Arava kicks in again. Usually when people wean down from prednisone, it's recommended that they do so slowly to allow the body to get accustomed to the lower doses. Could be that you just moved too fast, even though you'd only been on the high dose for a short time.

    Reply
  4. I understand!
    chloeev
    Thursday, May 14, 2009 at 02:29 PM

    I for one, certainly understand your sentiments! I have had Chronic pain for over 10yrs, back fusions, osteo & RA, etc.

     

    I remember the first time I was given a Mederol Pak. It came with instructions how to take the medicine. I took my first dose at night. The next day, I took my morning and lunch dose...by that afternoon, I was cleaning everything in sight...running around with no pain, almost like I had taken speed! I also found I was extremely mad at just about everyone I could think of! LOL!! I found myself cleaning and muttering about so and so...

    When I finally realized what was happening to me...I went and got the medicine and threw the rest in the garbage. I was so afraid of something that could alter my brain so bad. I never wanted anything like that again!

     

    Well, I did take Predisone again and it didn't affect me like that. It did give me energy and it took the pain away. I found I did not get agitated. Predisone then became a favorite of mine for a quick fix when swelling would get bad in my knees, feet and hands. I've never had another episode like the first since.

     

    I do understand the long term effects, especially the issues with the liver and kidneys. If you see someone who has been on Predisone for some time, you will see their face usually swells up and their skin can turn purple.

     

    But I do agree, it is nice to know there is a drug out there that can give relief when needed!

    Reply
    re: I understand!
    Anonymous
    Sunday, October 11, 2009 at 06:15 PM

    I too was given a Medrol pak, but I was too scared to take it!  40 mil of Prednison in one day?  I had heart flutters at 5 mil so I didn't take it.  Then my doctor gave me an injection in my knee and it made my knee and my whole body pain free! Isn't that weird?  The next day I had a tremendous headache and dizziness.THe following day I didnt take any meds.  The next day I took 5 mil of Prenisone and the headace and dizziness got worse.  For the next 2 days I did not take any medication at all and the headache went away.  The dizziness is still here but is subsiding.  Now I am take Tylenol for arthritis.  I am too scared to take the Arava.

    Reply
  5. Untitled Comment
    Miki Gordon
    Monday, June 01, 2009 at 01:27 PM

    No you're not alone regarding the prednisone!  I too feel that it is the only drug I am taking that works!!  I am new at this, for the past 2 years now... have been on methotrexate (at first) and then tried Orava shortly (didn't work well at all... just did NOTHING!), and then on to Humira, which I doubt is doing much either... at the negative talk about prednisone, I tried coming off, and got down to 5mg daily, with all symptoms returning full force... soooo, am now back up to 10mg, and also back on the methotrexate, and continuing the Humira (I have sort of become my own doc, however, and only take it every other week as opposed to his prescribing it every week).  He and I agreed to try the methotrexate weekly also, along with remaining on the 5mg pred.  However, after a week, I upped it back to 10mg... pain leaving... I am now into Qi Gong, and see that as very helpful and healing... just getting into it, and hoping for good results... I think I'm only going to do the methotrexate every other week as well... and continue on with the 10mg pred daily... What a strange dis-ease!!

    Miki

    Reply
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