Hi, I'm after others experience of fever like symptoms that I understand can come with Crohns. I've been diagnosed with mild Crohns just recently following 5 years of symptoms and the usual IBS diagnosis.
Recently I've been on Budisonide which changed my life! In my doctors bid to avoid staying on steroids long term I've been off them for around 6 weeks and on pentasa for around 2 weeks. I've heard these can take up to 6 weeks to do their thing.
As I've declined since coming off steroids I've had the usual fatigue, pain and nausea but also the feeling of general illness like a fever but not a fever.
It's hard to describe as its like nothing else...I have no temperature but my skin crawls feeling similar to a temperature, I feel light and sketchy headed and I feel cold. I spend most of my day dreaming about going home to bed following a hot shower! I also have a headache that ripples in the from of my head and has been with me constantly for around 3 or 4 weeks, more or less the same as the rest of the new symptoms.
What have others experienced around the so called Crohns fever like symptoms?
Thanks all
Matt
Hi, I have had many attacks of fever like symptons and in fact a lot of the time it was because I was suffering from an infection. Although I quite agree the Crohns tends to do this to you anyway. I have had Crohns badly since I was 21 and that was 50 years ago. Then the only thing we had to help with the complaint was steroids and I eventually weaned myself off them but at times I think you tend to go cold turkey, with the shakes and the shivers.and an overall feeling of not being able to cope with too much, also terrible firedness, which I would call "dog tired" and it is exactly how you feel. Unfortunately, people tend not to understand how you feel, because Crohns is a nasty complaint. One thing I would pass on to you, my Specialist always said that sufferers of Crohns Disease are always existing at about 80% power and never 100 %. I think that is the worst thing that gets to Crohns sufferers, the fact that you are always so tired.
Hope you feel better soon
Sheila
Hello Matt, I am in Oz so apart from the steroids I don't recognise your meds. I was diagnosed in 2006 after some vague pains then had no further trouble for 4 years. Can't say I had any fever or unwell feelings, I just used to get upper right hand side pain and loo issues which would settle down in a day or so until the next time. I guess it would probably indicate inflammation which may give you these symptoms, everyone seems to suffer differently or maybe a side effect of your meds? I am a great advocate of reading whatever you can about this disease and maybe talk to your gastroenterologist about any symptoms that you have. You do have to come off steroids very slowly as it affects your adrenal glands if you stop them suddenly.
There is a book called The Foul Bowel by John Bradley about his experience with Crohn's, it is informative as well as amusing, he went through the mill with his Crohn's, made me thankful that mine is mild.
Hope you feel better soon, Annabelle
Hi, I have Ulcerative Colitus and everyone of us that suffer from these debilitating illness' suffers in the same way. The only help I can offer is that I too, was on Pentasa and Steroids for the first 9 months after being diagnosed, but then my Consultant took me off the steriods but put me on Azathioprine and Pentasa. I stayed on Azathioprine for 4 years and left them off in January of this year and so far and I am touching wood, I have been fine. I am still taking the Pentasa, again touching wood, with no problem. Other people will say they could not take the Azathioprine but I had no problems. The steroids must be dropped gradually. Any change in medication does take time to work through so stick with it and obviously keep in touch with your nurse and consultant. I hope you soon begin to feel better.
Thank you Sheila. Your reply was really helpful. I've not had this side of Crohns before but it's good, as always, to know I'm not alone. Matt
Hi Anna, I'm pleased to hear you've been well for the last 4 years. My Crohns is also deemed mild and I'm always humbled by similar stories of others who have really been through the mill. I think my problems may have come about from a reasonable break between the steroids and pentasa, unfortunately it's just the way it worked out for various reasons.
Thanks and take care.
Matt
I'm pleased to hear pentasa is doing the job for you...and I'm optimistic based on everything I've heard of others experiences.
I just need to look past the next few weeks by which time hopefully pentasa is sorting me out (ish) and I'm doing a little happy dance!
Thanks
Matt
Hi Matt, my Crohns I believe would also be deemed mild although it has never been described that way to me - that's my view when I compare myself to others. Thankfully at the moment I am well and take no meds but that is due to a resection I had just under a year ago removing 70cm of affected small bowel. Prior to that I used to have frequent bouts of symptoms similar to those you describe & it would appear that the severe pain & feverishness were due to microperforations of the bowel & strictures. It was a more serious bout & a serious infection that led to my resection last year. I thankfully have been flare free since so stay meds free - my only weeks experience of steroids was not a pleasant one so I'm happy to avoid them. The only other thing i have really struggled with is my iron levels which does fit with fatigue, feeling cold & headaches - have they checked your bloods recently?
Hope you get sorted & the folk around you can support & understand what you are going through.
Hi Matt,
I have taken budesonide for five years, tgree times per day. I haveakso taken 750 mg x 3 capsules x 3 times per day of balsalazide.
In the past I had been on prednisone for years for an unrelated matter.
When I cane off of the prednisone I was tired and I did have some headache but no where near as long as you.
kind regards
judith
hi i have been on prednisolone taken orally and I found it great but now i have been trying to exist on salofalk . and prednisolone foam . but its not really working for me .. i have a miserable week last week . tirdness . apathy .. and lower bowel pain towards the weekend becase of constipation .i recon .. nayway its back to my specialist very soon methinks .. ps .. uk matt g i seem to remember the teatment budisonide. mentioned in despatches .ie on anogher med i took and im nearly sure it is mentioned in the context of being a steroid of oid of some nature .. please correct me if im n error
Hi Mike
Yes, Budesonide is a steroid
Hi Mike, yes that's right - it's a steroid. Sorry to hear they're not doing the job for you, it may take a while. Good luck.
Matt
Hi Judith. That's really helpful to know. Its been long enough now (3 weeks) to overcome any withdrawal symptoms following around three months on the budesonide.
Hi, that's a very good point on checking my bloods. It hasnt happened for a while but it feels like something has changed with me and my symptoms.
Thanks also for your kind words, I'm pleased to hear all is under control for you. Matt
Coming off steroids is difficult because when we swallow steroids our body relaxes and decreases it's own production. When the steroid is withdrawn, the body has to get back to work and it protests.
Typically, the higher the dose for the longest period of time means it will be more difficult to withdraw the steroid. Usually, it is decreased in a step fashion.
Hope things sort out quickly
judith
hi Matt.. so i could not get to see the specialist .for another two weeks.. so heres what i did to aleviate my flare up . on tuesday of this week17 th i took 1 plus a half f g sachet of salofalk at approx 9.30,,am.. then at around 1 pm . i took . about 1 and a half 5 mil spoons of . milk of magnetia... .. later at around five p.,m another 1 five mil spoon of milk of mag. and at severn pm two . more neurofen plus . then later at 11pm i usen one anusol sup.. and i retired . ..the folllowing day wednsday 18 i followed up with similar resimae.. and today from morining i followed with the same pattern .. today at 4.30 pm . my bowel started to exibit signns of movement and this wass the fires very welcome sign of activity since last weekend . sucess seemingls but appointment with specialist will be maintained .. i wouldent expect it to take six of five weeks to kick in the effects of the metzalizne shuld be felt in days and any type of steroid will definitley be fellt in the first week for definitly but i understand where you are coming form becase the prednisilone foam usually would work much quicker for me but i think what was happening was i was not inserting properly and it was not getting deep enough adn the swelling was further up and this would necessitate the other oral forms to be of use and may take a while . my latest bout of flare im putting down to a trip away from base and forgetting to pack the Salofalk . which i precrtption only here and this brought on with in days a bad flare up .. never again methinks.. mike
Hi, I'm 19 and I have every symptom as well!! I get really flushed, feeling light headed and dizzy. Headaches daily that won't go away, and the over all crappy feeling. I'm on methotrexate as pentasa and another didn't help me at all. Not sure if it's from my medication or what but these symptoms aren't going away!
Hi Kayla, really sorry to hear you're also going through a rough time. It does get confused with side effects versus Crohns symptoms. Hopefully when you get your Crohns under control the rest will drop into place.
Is your Doctor good and helping you through to the best management option for you?
Pentasa has helped the worst of my fever like symptoms but my GP said it may have been withdrawal symptoms coming off the steroids (budisonide). If you've been changing your drugs that's also a possibility. When did you swap medication?
Matt
I changed medications maybe 3 1/2 months ago. Don't know if it's making it better or worse. My doctor is ok with helping me out but I need more answers