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Posted 7/29/2011 2:11 AM (GMT 0)
Hi everyone,

This appears to be one of the better blogs for those of us w/ Crohn's disease. Diagnosed in 1990, I initially was on Prednisone for many years. My wife insisted that I get another opinion and the next thing I know is that I am on Pentasa and attempting to taper off of the Prednisone. Remicade did not work. I tried Imuran for about a year - no help. Still had to use Prednisone, although not much (10 - 20 mg). Then came Entocort. 9 mg did it....for a long time, combined w/ 1g x 4 of Pentasa daily. A few months ago, I started Cimzia, initially every 2 weeks and now every 4 weeks. At first, I maintained the Entocort and Pentasa dosages. As time progressed, I tapered off each, first one, then the other, back and forth, until I got to zero for both. The Cimzia "appears" to have knocked the Crohn's dead. (So far, so good.) HOWEVER, I have the most monstrous body aches and weakness that I have ever had...feels like I spent 5 hours straight at the gym working extra hard. Even my tiny wife has more strength than I do. GI doctor recommends "just wait and see", but daily living is a real pain, pun intended. So, I am seeking info out there to see if anyone else has a similar drug history and more important, is there an end in sight for the body aches and the weakness?

BBE
Posted 7/29/2011 1:43 PM (GMT 0)
I can't speak to the Cimzia....just wanted to say welcome and yes this is a great forum. 

Posted 7/29/2011 2:17 PM (GMT 0)
BigBad - welcome! I don't have any info on Cimzia, but there are others here who do and I hope they will help out. I'm glad you found us.
Posted 7/29/2011 2:40 PM (GMT 0)
Hi Bigbad and welcome to Healingwell. Kazbern above uses Sulfazine and I do know that helps with the Crohns and body pain. I have no experience with Cimzia, but we do have members who are using it. I wonder though if the Cimzia is causing your pain. Another thought is do you see a Rheumatologist? The reason I ask is I also suffer with Fibromyalgia and that will give you that all over body pain too. Hope you find some relief soon. Hugs!
Posted 7/29/2011 4:25 PM (GMT 0)

Hi Nanners,

You provide an interesting option.  I have previously discounted that option for the following reason: the overall body aches and the weakness showed up rather rapidly as I 1) continued on the Cimzia and 2) Discontinued my use of Entocort and Pentasa.  so, in my mind (and I'm NOT a doctor), it is either the Cimzia or it is the elimination of the Entecort / Pentasa that is causing the aches.  Entocort is a medication that is supposed to work mostly in the intestine, but I know that it gets into the bloodstream and can affect the rest of the body.  Therefore, your hypothosis may be accurate IF the Entocort has been masking the symptoms all these years.  I'll revisit with my GP (my GI doesn't seem to be of much help) and see if he can provide a recommendation.  Thank you very much for the feedback. I'll keep y'all informed.

BBE

Posted 7/29/2011 4:51 PM (GMT 0)
I never did cimzia, but rem. and it gave me more body aches than I've ever had, I never had arthritis until rem. and I think it gave me arthritis, because now my flares are arthritis, migrating kind, this is new to me, I started rem may of 10 and stopped 5/11. it also made me cramp at resected site more, but I have cd in esoph. and throat, mouth. and it cleared that up. imuran has claeared it up now, with hardly any side effects to evan mention. and yes I have to take pred. as well, I'm at 10mg. I was dx 1970. it was easy dx. I was obstructed so they had to operate, and walla, right in front of there eyes. so I didn't suffer undx'ed, like a lot of people do, for so many years.

AG
Posted 7/29/2011 6:15 PM (GMT 0)
I've had Remicade and Humira, but not Cimzia. I know I had joint/muscle aches about a month after I started Humira...but during that time I also tapered off prednisone. The doctor was able to test for ANA to see if it was the Humira...it was normal, so consider to be steriod withdrawal side effects...3-4 months later, and most of the aches have subsided.

For those familiar with Cimzia, is there the same/similar test to determine if Cimzia is having this effect on someone?
Posted 7/29/2011 6:20 PM (GMT 0)
How long were you on prednisone?
Posted 7/29/2011 7:26 PM (GMT 0)
Welcome to Healing Well! I was on Cimzia for several years but never had the pains you are describing. I would get somewhat tired and a little dizzy the day I took the shots but the next day I was fine.
I did have a lot of body aches with Humira but never Cimzia but remember, each of us process medication a little differently so it is always a possibility although I tend to agree with Nanners about the arthritis and/or from weaning off the steriods.

Cimzia was a great drug for me. Little to no side effects and it worked awesome for my Crohn's.

Let us know what you find out from you Dr.
Take care!
Posted 7/30/2011 12:10 AM (GMT 0)
To Clonehead,

I was on Prednizone for about 12 years. Glad to be off the stuff. We (my Dr. and I) believe the Prednizone somehow affected one of my glands and now my Testosterone is off and I need to take shots every 2 weeks. I time them to be on an opposing weekend from the Cimzia.
Posted 7/30/2011 12:39 PM (GMT 0)
Hello and welcome BigBad . A question for you . Have you had a stress test or any other test for your heart . I went through this gambit years ago with all my doctors thinking only of crohns related problems when in fact I had blockage in coronary arteries . Another possible cause of aches and weakness is low potassium . This will really knock you down and is something doctors seldom check , unless you ask . Certain meds and also crohns can rob you of potassium . Don't just get a bottle of potassium pills at the vitamin store and start taking them though as an excess will stop your heart . Not a good thing . Anyway this is all I can come up with but I hope you find an answer soon and get back to feeling like your old self .
Posted 7/30/2011 2:48 PM (GMT 0)
Hello BBE and welcome,
i'm only a newbie here myself and am learning as i go along so really can't advise you much cept to say that since being diagnosed 2mths ago and having started my meds the only sympton i have at the moment is the weakness/fatigue...i don't knowif this will pass also,
Slainte (good health)
Posted 7/30/2011 3:03 PM (GMT 0)
Hey conmire, I have a question for you:) I too need to have both knees replaced. I just wondering what the zydol/diclac med is? Is it by any chance a NSAID? Something like aspirin based, Ibruprofen or Naproxen? The reason I ask is NSAIDS are a big no no with Crohns as it can trigger flares and cause bleeding in us. I just don't want you causing yourself more damage. Hugs!
Posted 7/30/2011 5:58 PM (GMT 0)
Welcome BBE.
Every time I taper from a high does of prednisone I spend months with severe muscle and joint aches. The higher the dose of prednisone and the longer time on it, the worse the pain continues. It helps to slow the taper down.
One other thing, the last time I went to the rhumatologist they checked my Vit D level and it was really low. After receiving some mega doses of vit D, I now have much less muscle pain than I used too.
Posted 7/30/2011 6:53 PM (GMT 0)
This will be a multiple response.

To Sniper - No stress test. However, you bring up a very interesting point about the potassium and I will discuss this w/ my doctor ASAP.

To conmire - welcome right back at you. When I was taking the 9 mg of Entocort, I only occasionally felt aches and it lasted usually only a day. Usually controlled this w/ OTC pain pills (Tylenol, etc).

To montana yoda - the good news for me is that I have not been on Prednisone for about 10 years, so I have basically forgot what I was experiencing during that time. However, I also had a low Vit D and now take 50,000 units weekly plus whatever is in a multivitamin I take daily.

Thanks to all for the feedback. I have a 3rd party consult Monday and will keep all y'all informed.

BBE
Posted 7/30/2011 8:00 PM (GMT 0)
Hi BBE, and welcome!

I've never tried Cimzia either, but am glad to hear that at least your CD is doing better. There must be something to help with the joints and muscles, though. I have had the same issues for years, but much milder than yours. I usually just take Tylenol and make sure I'm getting enough nutrition. Sometimes exercise is helpful.

Hope you get some relief soon.

Roni
Posted 7/30/2011 8:24 PM (GMT 0)
Hi Nanners,
Yes...Diclac(75mg) is an NSAID.....my GI asked me what meds i was on for my artho and she advised only to take them if absolutely nesscesary...my priscribed dose is 75mg x 2 times daily but i'm only taking one 75mg daily when needed. i am awaiting appointment to see my orthopeadic consultant to see if he can put me on something else..failing that i'm just gonna push for joint replacement....i am almost in constant pain now with my right knee(left not too bad) ..i am also considering seeing a pain consultant.....Thanks for the info ...i will certainly speed up things at this end as i don't want to be adding to my problems,Hugs x 2
Slainte(good health)
Posted 7/30/2011 8:28 PM (GMT 0)
Welcome BBE,  from another newbie.

So true we are all different: Entocort was like taking nothing for me.  Pred caused my adrenal glands to shut down!

Yes, absolutely this is a great forum. So many members posting with so much care. I can't speak to your experiences, but wish you the very best with your new cousult. wink

 

Posted 7/31/2011 2:42 PM (GMT 0)
Big B , if you have been on pred that long your due for a bone density test too . I am borderline breakable thanks to the stuff .
Posted 7/31/2011 10:43 PM (GMT 0)
Sniper,

At least I got this one performed multiple times without any coaching - and the great news is that my bones are "normal" I assume that means all is OK).

Question for anyone following this thread - has anyone identified WHY their VIT D level would be so low? I take supplements - 50,000 once a week, and 800 (min) daily. So far, so good, but recent test results show I am borderline low, even with this massive dosage.

Could this have any effect on the muscles and joints from a pain or weakness point of view? I'll need to check w/ my Doc.

Later,

BBE
Posted 8/1/2011 2:55 AM (GMT 0)
Low vit. D in Crohn's patients is because of poor nutritional uptake, IMO. There's probably some other endocrine factors in there having to do with calcium and whatever, but I think it's pretty common here on this forum to have low vit. D. In fact, it's common across the western world probably, what with all of us working inside and then using sunblock to protect ourselves against skin cancer whenever we go outside.
Posted 8/1/2011 4:27 AM (GMT 0)
Yep kazbern is right , I take tons of vit D. I think it has to do with where crohns happens in the colon . Most people have damage where the most uptake of Vitamins happens.
Posted 9/13/2011 1:29 AM (GMT 0)
It's been a while and I've been to a lot of doctors, had lots of (ouch) tests and no solution. I'll recap - Started Cimzia, tapered off of Entocort and Pentasa, and after a brief period, started with aching muscles and joints and considerable weakness in my muscles, most notably my (oops, forgot their name) upper front leg muscles. After receiving no conclusive evidence of any particular disease, my GP and I decided to put me back on Entocort and Pentasa, staging upward gently. Well, guess what, most symptoms are disappearing. OK, now what? I'm not sure, but I see lots of blood-work in my future. OBTW, something very unusual happened during the period I was on Cimzia and not taking Entocort or Pentasa - my Testosterone shot thru the roof. Me - a 60 year old guy with T numbers higher than any red blooded teenager. Not sure of the Pentasa and /or Entocort will affect this.......too many variables.

I will ask once again - is there anyone out there that originally was on Entocort (9 mg / day) plus Pentasa (1,000 mg, 4 x / day) that shifted to Cimzia (400 ml every 28 days)? What side effects, if any, did you have after tapering off of the Pentasa and Entocort? How long did it take you to taper off?

Later,
BBE
Posted 9/13/2011 3:16 AM (GMT 0)
I had very strange pain in my feet when tapering off prednisone in 2009. I could barely walk for a couple minutes but then could walk until I sat down for five minutes and once again could not walk. As a mail carrier this cycle would repeat itself twenty times a day. Bad enough that some of my customers actually pulled over to ask if I needed help!!

I believe I was on immuran at the time too but my memory is so bad. Self resolved in a couple months I think. I mention this since both drugs are related. I may have been on Asacol also at the time which is similar to pentasa I think? Maybe I should change my name to Wishy-Washy?
Posted 9/14/2011 1:20 AM (GMT 0)
Hey, FunGuy, thanks for the post. You indicated that the problem self resolved in a couple of months. I have a friend at work that was on long tern Prednisone and when he stopped, had muscle pains so bad, he couldn't sit for any length of time. Took him a year before the pains went away - and he's fine now. So I now have two others that have experienced muscle pains when coming off of a steroid (plus Melsalamine (sp??)). Very interesting. OBTW, FunGuy, do you have any side effects now?

Regards,
BBE
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