Aches and pains from prednisone withdrawal...

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/15/2009 6:25 PM (GMT -6)   
Without getting into long details for those who don't know me - did you have lots of pain after prednisone tapering.??
My doctor had be taper very slowly after taking 40 mg., 30, each for week and then 20 mg. for about 8 weeks and then 10, 5, 2.5, over a couple months.  about two weeks after stopping prednisone and 6MP (because I could not tolerate it) I am aching so much. (stopped prednisone completely about August 4)  I already have arthritis in knees.  I am 69 but never had this type of pain and aching all day.  I can only take Tylenol for pain whch I am at the max.
I will see a specialist on Oct. 8 but should I contact my primary care doctor for any reason.  I am not in remission but not too bad either - just hanging on until my appointment. (for more info read my post about GI dumping me)
ElaineNY
 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Red_34
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Date Joined Apr 2004
Total Posts : 22057
   Posted 9/15/2009 6:38 PM (GMT -6)   
I have never been on prednisone for my Uc but I was on long courses of steroid enemas. After being on them so long, I had the cumulative effect like you would see in the side effects of pred. After I stopped taking the enemas, my body ached too. I did alot of hot baths and a lot of Tylonel. Mine didn't last as long as you though. Maybe a couple of weeks. I hope these aches get better for you. Are you noticing them lessening any?
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**IBS~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 9/15/2009 6:41 PM (GMT -6)   

Not really much better but not a lot worse either - thank goodness.  My upper arms hurt a lot and feet.  I still have swelling in my ankles some since prednisone and 6 MP.  I LOVED taking prednisone and wish one could take it indefinitely - but I understand why not!

Heat is helping and BenGay which I use anyway for my knees!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 9/15/2009 7:08 PM (GMT -6)   
I've had that too Elaine, after prednisone, entocort, and steroid enemas - lasted several months but faded away. Prednisone is poison, I guess.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.
 
Currently off all meds and probiotics. Using grapefruit seed extract, iron supplement, calcium, L-glutamine and psyllium seed powder with good effect.

 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2024
   Posted 9/15/2009 7:55 PM (GMT -6)   
Yes and YES! The course I went on last year was the one that did it for me.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5418
   Posted 9/15/2009 8:02 PM (GMT -6)   
Yes, and the pain lasted about a year!  Hang in there.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/16/2009 9:32 AM (GMT -6)   

HANG IN THERE???  What will I do when I can't do my housework or even go shopping for more than 10 minutes - because of the aching and pain?  Oh well, I loved prednisone when taking it.  Maybe my specialist I see in Oct. will put me back on it - I would not mind!  (aside from puffy face and edema I loved it)

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 9/16/2009 11:29 AM (GMT -6)   
Did you take extra calcium supplement when you were on Pred? I took Pred for 3 months last year and am taking it again since August. On both occasions I was told by my doctor to take 3 tablets of calcium with vitamin D everyday. Usually I take only 1 tablets.
I didn't feel any pain after of Pred last year.
I wish you will feel better soon.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema, Salofalk suppositories, Salofalk tablets 1000mg x 4/day, Entocort enema
Supplements: Calcium with Vitamin D, Vitamin B Complex, Omega 3, Vitamin C and psyllium capsules (Metamucil).

Present status: Flaring since July 2009; on 35 mg Prednisone, tapering


LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 9/16/2009 11:39 AM (GMT -6)   
I had the aches and pains as the pred was being tapered (this was ~5 1/2 years ago), but they went away once I was off the Prednisone.
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)


ellebeth
New Member


Date Joined Sep 2009
Total Posts : 17
   Posted 9/16/2009 11:48 AM (GMT -6)   

I had such terrible pain in hips and knees I was literally scooting down the stairs on my butt...I took extra calcium/vitamin D and used Tiger balm (BenGay was ok too) and put heat on.  I now take glucosamine.  After 2 years of prednisone, now off about 5 months, my joints are finally starting to feel better.  I never want to take prednisone again.  For the one thing it helped, it gave me a dozen other problems.

Take care of yourself first; housework can wait!!


Diagnosed 2007
Asacol, Prednisone, Psyllium, Glucosamine, Probiotics, Fish Oil, various vitamins, supplements


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6907
   Posted 9/16/2009 11:53 AM (GMT -6)   
Elaine, I just wanted to let you know about some pain patches my mom uses (she has a lot of back and neck trouble due to whiplash injury) called Salonpas. They've got methly salicylate, menthol, and camphor in them...so you smell pretty fragrant when you wear them, but they help a lot. I've used them a couple of times and they make a huge difference. My mom has also tried BenGay, but she said the Salonpas work better and last longer. You should be able to find them in the pharmacy aisle of any store and I think Walmart carries a generic brand.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Current meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3131
   Posted 9/16/2009 12:27 PM (GMT -6)   
Yes, I had horrible aches & pains after I stopped pred- maybe from about 5mgs down to 0, then the pain got worse when I was finally off pred, & stayed BAD for a long, long time. It's terrible. So bad I could barely walk in the mornings, literally fighting tears. And I have a high tolerance for pain! It does go away.... sorry!!!! Maybe Tylenol? I think it was a good 6 months before I felt better, & the pain was still there but manageable.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/16/2009 1:04 PM (GMT -6)   

Thanks everyone!  I am counting on this getting better with time. 

Not sure where I would put the patches.  My husband uses them for lower back - has tried them all.   My arms hurt - upper - fingers, side of my feet, etc.  Seem a little better today.  I already take the maximum dose of Tylenol for my knees so I have to be careful of my kidneys and not take more. 

I may try more calcium w/D.  I already take just one a day because I eat a LOT of dairy.  Maybe add another and hope it does not mess with my IBS!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 9/16/2009 1:21 PM (GMT -6)   
     Elaine, where exactly is the pain?  I have pain in my back but thought that was from the osteoporosis.  I refuse to take the meds for osteoporosis, even the doctors agreed Fosamax and Actonel were not for me but suggested the Boniva injections.  Well, I read about the Boniva injections and the report said it hasn't been on the market long enough to know any long term effects.  They can stick it.  I take enough crap which I know isn't doing my body good but I need relief from the UC shakehead .  So, I will just stick to the Calcium for now.  Besides, even taking the osteoporosis meds...they tell you to still take calcium!
     I lifted a heavy drawer last week and I think that is why my back hurts so bad.  As a matter of fact, I knew as soon as I lifted that drawer I made a big boo boo.  It hurts all across the mid section, from rib to rib, of my back.  I was going to a chiropractor, but now even afraid to go to him.  My friend gave me a box of Salonpas that fruitgal mentioned her mom uses.  I put it on today. Don't notice any results yet.  I was taking hydrocodone but hate to get addicted to that.  My rectum is bleeding now too, but I have internal hemorroids and was wondering if the lifting irritated them too.  Guess I will never learn. nono
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/16/2009 1:34 PM (GMT -6)   

Christine - I sure know what you are saying.  My pain is mostly legs, ankles (you know I have knees with no cartiledge anyway).  The new pain that came after getting off prednisone is like from my pinky to pinky - side of my hands, arms and neck - like pulled muscles.  Luckily my back is not very bad - yet!!  AND - swelling in my ankles comes and goes with discomfort.

My UC is not gone by any means - still a little blood and mucous some mornings but no real diarrhea.  I have nausea almost every morning but have for years so just taking pepto when it is really bad.  Dealing with all this without any real UC medications and know that all will "hit the fan" soon probably.  Hhope I can stay pretty good until I see the specialisst in Albany next month.  I keep trying the rectal meds - but I get so sore from them!

Good luck to you!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 9/16/2009 8:07 PM (GMT -6)   
When I tapered off, I had terrible joint pains as well. I really could barely move and definitely felt like I was crippled most of the time.

I went off in August 2008 and started feeling better in January 2009.

Also though, I use Canasa, and it causes me terrible joint pain as well. I didn't use it back then-I started this past spring and have use it off and on. Doc said it is rare, but does happen. But with that one, the pain goes away immediately when I stop using it.
Laura
 
34 years old, stay at home mom of 2 girls, ages 4 and 3
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Back on Canasa temporarily because I took Biaxin for sinuses and started seeing streaks of blood again.
 
Also take multivitamins and milk thistle daily.


Soleil_a_Nuit
Regular Member


Date Joined Jul 2009
Total Posts : 31
   Posted 9/17/2009 4:00 AM (GMT -6)   
hi, I used to take Ibuprophen and  ruined my stomach lining giving myself really bad Gastritis etc.. So the Doc said NO MORE Ibuprophen.
Tylenol never got rid of the  pain, also suffered from terrible tension migraines. So finally 3 months ago, my Doc prescribed Morphine and it barely works. We have upped to dose to the point where I cannot drive anymore, and not too good at cooking etc anymore but the muscular pain does not go away from Morphine only Iburprophen worked for me. Can you ask your Doc? I cant take it anymore.
 
Good Luck.
Diag. 2005, Severe Flare Up for a YEAR, Remission for 2 years, no maintanance, I was really convinced the Doctors made the wrong diagnosis. Live in the country and had really contaminated well water when my husband and I moved into our new house. 40 times over the potable guide lines in Canadian drinking water. So I Didnt even look into the disease, I healed (or so I thought) and was told nothing from the Doctors at the time.
 
Came back like a VENGENCE in Sept 08 and have been bleeding since. Sept 09' Currently on Plain Yogurt, Multi Enzymes, Vit. D, Mulit Vit, Florastore, Aciddophillus, Asacol 2 - 3x a day with Salofalk suppository morning and night.
 
I rarely eat carbs, grow almost all my vegetables and fruits for Summer and Fall ONLY.
Everything else organic, I never add refined sugar to anything, sometimes unpasturerized honey. I rarely drink coffee, no Cows milk, only Almond milk. Had my gallbladder out a year before diagnosis and quit smoking a month before first Flare Up in 2005.
 
FYI: Prednisone turned me into a sweating Pyscho Clean EVERYthing Woman, even when I was sitting on the toilet I would ask my husband to pass me a broom so I keep sweep sitting on my throne. lol!
I dont want to go back on it.


Dynamo1
Regular Member


Date Joined Mar 2009
Total Posts : 33
   Posted 9/18/2009 8:57 AM (GMT -6)   
This week I have stopped taking everything except Asacol x 4 x 2. I have been taking Pred then Imuran. Have tapered off Imuran from 150mg to 50 mg, UC was fine and under control but....
My joints were aching so badly I could hardly walk, plus after 4 months started to get blisters /cold sores around my face. Dreadful. Within 4 days I can no longer feel arthritic pain and my spots are clearing up. However, my stomach is rumbling a bit.
UC first diagnosed 2007.
Asacol 3 tabs twice a day / Predisolone 20mg, 15mg, 10mg 5 mg
 
Flare-up Jan 2009 used Prednisolone came off it then had major flare up and developed gout.
 
Colonoscopy March 2009 reveals Severe Pancolitis.
Asacol 4 tabs twice a day / Prednisolone 40mg 2 weeks, 35mg 2 weeks
then start Azathioprine.
 
June 2009 125mg Azathioprine plus Asacol 4 x 2  UC has cleared up completely but boy do my joints ache.
 
 
 
 


Dynamo1
Regular Member


Date Joined Mar 2009
Total Posts : 33
   Posted 9/18/2009 8:57 AM (GMT -6)   
This week I have stopped taking everything except Asacol x 4 x 2. I have been taking Pred then Imuran. Have tapered off Imuran from 150mg to 50 mg, UC was fine and under control but....
My joints were aching so badly I could hardly walk, plus after 4 months started to get blisters /cold sores around my face. Dreadful. Within 4 days I can no longer feel arthritic pain and my spots are clearing up. However, my stomach is rumbling a bit.
UC first diagnosed 2007.
Asacol 3 tabs twice a day / Predisolone 20mg, 15mg, 10mg 5 mg
 
Flare-up Jan 2009 used Prednisolone came off it then had major flare up and developed gout.
 
Colonoscopy March 2009 reveals Severe Pancolitis.
Asacol 4 tabs twice a day / Prednisolone 40mg 2 weeks, 35mg 2 weeks
then start Azathioprine.
 
June 2009 125mg Azathioprine plus Asacol 4 x 2  UC has cleared up completely but boy do my joints ache.
 
 
 
 


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 9/19/2009 10:15 AM (GMT -6)   
WOW, I'm currently going thru the same thing.
Stopped Prednisone a couple of months ago and my whole body aches. It's often hard to walk. I went to a General Practitioner last week and had some blood drawn. He's going to do a bone density test along with the regular checkup tests.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/19/2009 5:44 PM (GMT -6)   

I was told about the side effects when taking prednisone (which were not bad for me) and the long term possible bone loss, etc. but NO ONE mentioned the aches and pains that make it almost impossible to "live" - moving around at all being nearly impossible some days.  DARN!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 9/20/2009 2:23 AM (GMT -6)   
Yes. The joints in my hands hurt, and my knees would go crackety-crack when I walked down stairs. I did taper too quickly though--about 5 mgs every three to four days, down from 25 mgs to 0.
[brown]Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).[/brown]


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/20/2009 10:17 AM (GMT -6)   

Joy - how long did the aches and pains last?  I am hoping there is an end or at least better!  I did just as my specialist told me to taper from 25 (was on 40 and 30 each for week and then 20 for a month).   Maybe would have been good to taper a little slower! Almost two months now since last prednisone.

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008  
Allergic to all mesalamines including rectal meds, etc. 
Prednisone for about 4 months - tried 6 MP with no help.
Rectal meds only made bleeding, etc. worse. 
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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