Fever like symptoms?
Posted , 8 users are following.
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
3 likes, 18 replies
sheila51371 UKMattG
Posted
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
UKMattG sheila51371
Posted
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
anna64644 UKMattG
Posted
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
UKMattG anna64644
Posted
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
maureen15717 UKMattG
Posted
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.
UKMattG maureen15717
Posted
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
HellyE UKMattG
Posted
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.
UKMattG HellyE
Posted
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
ihavenonickname UKMattG
Posted
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
UKMattG ihavenonickname
Posted
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.
ihavenonickname UKMattG
Posted
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
mike_82485 UKMattG
Posted
ihavenonickname mike_82485
Posted
Yes, Budesonide is a steroid
UKMattG mike_82485
Posted
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
mike_82485 UKMattG
Posted