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Desperately need advice

I'm getting desperate here. Last night, for the second night in a row, I have experienced the most horrible symptoms. As a 64-year-old man, it is common for me to have to get up to go to the toilet and urinate several times during the night.

Last night and the night before, when I tried to sit up and get out of bed, my body would not work. Even the slightest movement came with extreme difficulty, and equally extreme pain. It is like somebody flicked a switch, and turned me into an 90-year-old arthritic overnight. I had no strength in my muscles, and when I eventually managed to get my feet on the floor, I couldn't stand. Every movement was accompanied by horrible pain. It took 30 min from the time that I woke up to go to the toilet and then to get back into bed. I can only be thankful that it wasn't an urgent call to go to the toilet, because I would not have made it. This happened to me twice last night, and I think three times the night before.

Oh, and both nights after the last episiode I had a drenching night-sweat.

Ok, I am 64 years old, and in the past have had a little muscle soreness and stiffness occasionally. I expect that at my age. But until recently I have been very active, going dancing (ballroom and rock'n'roll), walking every day as well as doing nature walks and similar activities. Apart from having what I thought was irritable bowel syndrome, I was a reasonably fit and active person.

That all changed when I had some night sweats and my doctor decided to send me for a colonoscopy, which eventually led to my diagnosis with Crohn's disease. The diagnosis was a godsend in one way, as I started to look for the first time at my diet and the role that it may be playing in my bowel problems. However it also led to me being prescribed first of all with prednisolone, and then with Imuran.

Can somebody please tell me, is it the Imuran or the prednisolone that could be causing these horrible arthritic-like symptoms? Or both?

I was initially on 12.5 mg of prednisolone per day which then went up to 25 mg. This was for about a month. My GI then introduced Imuran, 25 mg per day, and started to taper off the dose of prednisolone, immediately going down to 12.5mg. However, this caused me some problems with diarrhoea so I'm temporarily back to 25 mg per day, but am going to be tapering it off 5mg each week for the next 5 weeks while I wait for the Imuran to "kick-in".

Please give me your best advice, what can I do? This is not like anything I've ever experienced before, and I hate it. I fear for what might happen if I cant get to the toilet in time one of these nights. I really feel like just stopping all of the meds immediately, but I suspect that to do so would give me even worse symptoms of withdrawal.

Gra
 
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I think you really need to see your Dr right away. I'm sorry that I don't have any better advice than that. I just wanted you to know that someone read your post and was thinking about you and wishing you well. I really hope you get this figured out quickly and don't have any more scary nights like that.
 
I agree with Jer's Girl - contact the doctor. Just looked up possible side affects of Imuran (Azathioprine) on this US site: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000602/

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately.
rash
fever
weakness
muscle pain
 
Location
Australia
Hi Gra
Your symptoms could be reflective of active CD, or a side effect of your control medication.
I know when I started on Imuran - the side effects put me in hospital. My spine seized up, I had symptoms of a very bad flu, I couldn't move my arms and legs properly. I had to crawl to the bathroom, or be carried. It was bloody awful and it nearly killed me. The first drug they put you on may not be the right one for you. There are plenty of other options for you to try.

Have a chat with your GI and maybe head for the hospital. You are better to err on the side of caution than do yourself an irreversible damage.

I hope you get relief soon. This disease is a real bugger.
 
Hi Grand, I feel really bad, I read your post the other day and was thinking how distressing that must have been for you so I did a bit of reading about med side effects. I posted a message to you and I must have forgotten to actually hit post, so again I apologize for that. Anyways my original post basically said what others have mentioned above. I.e) you should DEFINATELY contact your Dr. and that there can be severe muscle weakness associated with Imuran. Also it is important to remember that as we age drugs can have a greater effect on our systems in regards to metabolism and such so paying close attention to side effects becomes increasingly important. It is also possible that there is something else entirely going on. Please keep us posted as to how things are going with you. Also if it turns out to be med related then that information will be really good to pass on to others on here taking the same meds.

Sending positive thoughts your way,

Kat
 
Ha ha my auto correct converts Gra to Grand....oops although being called Grand isn't so bad, I suppose it could have called you Grape!!! Which would have been really silly...just thought I would clarify the error =)

K
 

DustyKat

Super Moderator
Hi Gra,

I would definitely see the doctor not just for symptoms but to query the dose of medication, both Imuran and Prednisolone. As far as I am aware the dosages for Prednisone and Prednisolone are similar (I may well be wrong here) so in most cases 25mg wouldn't be a high enough dose to knock inflammation on the head before tapering. Similarly with Imuran, it is normally calculated at 2-2.5kg per kilo of body weight so you would have to be very light indeed for that dose to be therapeutic. Are they awaiting a TPMT test before increasing your dose?

Dusty. xxx
 
Hi Grand, I feel really bad, I read your post the other day and was thinking how distressing that must have been for you so I did a bit of reading about med side effects. I posted a message to you and I must have forgotten to actually hit post, so again I apologize for that. Anyways my original post basically said what others have mentioned above. I.e) you should DEFINATELY contact your Dr. and that there can be severe muscle weakness associated with Imuran. Also it is important to remember that as we age drugs can have a greater effect on our systems in regards to metabolism and such so paying close attention to side effects becomes increasingly important. It is also possible that there is something else entirely going on. Please keep us posted as to how things are going with you. Also if it turns out to be med related then that information will be really good to pass on to others on here taking the same meds.

Sending positive thoughts your way,

Kat
Thank you Kat for your post, I saw my Dr and told him about it on Friday, but all he said was "yes, well that's probably another manifestation of the Crohn's disease". He didn't tell me thing about it, or how long it might might go on, and certainly didn't seem willing to admit that it may have something to do with the prednisone for the Imuran. I don't think he has a particularly good bedside manner!

Thank you also for pointing out that ageing can cause the drugs to have greater side-effects. This is something that I had wondered about, but couldn't find much information on.

As to how I am now going, my Dr put me onto a slower taper of the prednisone, my arthritic like symptoms are still present, and I think have actually got worse. I have also developed a small number of red splotches on my hands, which look like Erythema Nodosum, they are not yet painful or itchy, but they only developed about 36 hours ago.

Again thank you for your concern for me, I really appreciate it.

Gra
 
Do you have any arthritis in your past. Crohn's makes it more difficult it seems one goes hand and hand. i have Had crohn's now nearly 40 years now. and my arthritis as gotten worse. Crohn's attacks your immune system greatly especially if you have it inflamed i don't know much about the other drug Imuran but i do know about preds. The preds can cause a great range of systems side effects and joint pain is one of them. In the mean time i would suggested like the others said i would go back to my PD and discuss it further.

best wishes
 
Ha ha my auto correct converts Gra to Grand....oops although being called Grand isn't so bad, I suppose it could have called you Grape!!! Which would have been really silly...just thought I would clarify the error =)

K
That's OK Kat, I love being called Grand! :)
 
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Hi Grand (I'll just stick with that...lol),

Just checking in...have your symptoms improved since the slower taper of pred? And as to your doctor it seems like he has a rather cavalier response to your symptoms, I wish all of our docs had to actually feel what we feel just for a day...I bet they would try a bit harder to solve some of our issues if they really knew what it felt like. Of course there are wonderful docs out there who do try very hard, so I don't want to lump them all together. I was also wondering if you have a rheumatologist for your arthritis? Maybe you could get some better answers through him....just an idea. Oh and I have no experience whatsoever with erethyma nodosum however I have seen a number of threads on here from other members. Do a search for that and you could probably get some info from others who have been dx'd with that.

All the best,
Kat
 
Hi Gra,

I would definitely see the doctor not just for symptoms but to query the dose of medication, both Imuran and Prednisolone. As far as I am aware the dosages for Prednisone and Prednisolone are similar (I may well be wrong here) so in most cases 25mg wouldn't be a high enough dose to knock inflammation on the head before tapering. Similarly with Imuran, it is normally calculated at 2-2.5kg per kilo of body weight so you would have to be very light indeed for that dose to be therapeutic. Are they awaiting a TPMT test before increasing your dose?

Dusty. xxx
Hi, Prednisone and Prednisolone are in fact just different names for the same base drug. I am now back on the Prednisone (20mg/day) only, havent taken Imuran now for 3 full days, and all the bad symptoms have dissapeared - the red spots and blotches, the lack of appetite and screwed up taste buds, the muscle stiffness and joint pain. I have had several nights of night sweats while coming off the Imuran. I realise now that it (Imuran/Aza) was actually making my CD much, much worse than it has ever been - another day or so and I think I would've been in hostpital. I swear I will NEVER touch that substance again.

Gra
 
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