I have been taking the mercaptopurine for three weeks now. I'm told it takes four to six weeks for the effects to be seen. I really hope that it does something!
Every day I feel like my flare up is getting worse! The fatigue seems to be improving thank goodness. Perhaps the iron tablets are having some effect here. My IBD nurse has advised me not to take more than 200mg of iron sulphate a day, as it has a tendency to affect the gut.
However, I am suffering headaches fairly regularly, my tummy seems to feel more uncomfortable more often if I do not stick to a low residue diet. I have also noticed that high fat also seems to upset me which I've never noticed before. Also, probably the most worryingly, more Erythema nodosum seem tho appear on my legs each day!
The pictures aren't brilliant, but you can see the biggest ones. I counted them today and that's sixteen! What worries me is the last consultant I saw suffered that those crohns sufferers who get Erythema, have an aggressive form of the illness. I have been taking a low dose of prednisolone, too try and keep them under control while I wait for the mercaptopurine and humira to start doing something. I started at 10mg, and then brought it down to 5mg. It looks like I'm going to have to move it back up to 10mg again. This is very annoying as they make me retain water, and put on weight. I should be grateful that even though I'm in flare I'm not losing weight. However I am actually quite a few pounds too heavy, and putting on more would definitely not be good for me.
So, this is the limbo I currently find myself in. I'm currently taking a biologic, an immunosuppressive, and a steroid, and as yet I haven't seen much improvement, and things seem to keeping getting worse rather than better. So, will I see an improvement before I next see my consultant in August? I'll let you know!
Wednesday, 16 July 2014
Sunday, 6 July 2014
Improving fatigue with iron supplements
After starting mercaptopurine a little over a week ago, I have suffered the worst case of fatigue that I can remember. I had put it down to the new drug, as it is one of the listed side effects, and after looking on forums such as crohnsforum. www.crohnsforum.orgI found that many people have experienced this. However my most recent blood test showed that my haemoglobin count and ferritin levels had dropped. Could this be the reason I have been so very tired this week?
I have started to take iron sulphate supplements on the advice of my GP. 200mg a day. This can upset the gut somewhat, so whether or not I can tolerate it remains to be seen. I hope this will improve and help me to function day to day. I have a very full life, with a full time job, two children, a house to maintain, and a dog to feed and walk. Not to mention a number of other interests and hobbies I would like to persue. When I am fatigued, it can be as much as I can do to get up and dressed without feeling like I could do with a sit down. Most of the time I can ignore the feeling and keep ploughing through, but it takes the joy out of everything, and makes every task arduous. It's like you spend every moment walking through treacle!
The national association for crohns and colitis has recently completed a four year research project on fatigue in ibd, the results of which are published on their website; wws.crohnsandcolitis.co.uk
They have created a questionnaire which you can fill in to help measure whether you are suffering from fatigue and to what degree it is affecting your daily l life. I found that I scored fairly highly in this, probably not surprisingly! I guess what I should do, is take my iron for a week or two, and then fill in the questionnaire again, and see if I have improved. I'll keep you posted on this.
Of course, the other question is, why am I anaemic? Is it my diet, as I am currently on low residue to try and reduce my symptoms. Is it that my bowel is not absorbing the iron very well, or is it that I am losing blood? (Of course it could be a combination of all three of these!)
I have started to take iron sulphate supplements on the advice of my GP. 200mg a day. This can upset the gut somewhat, so whether or not I can tolerate it remains to be seen. I hope this will improve and help me to function day to day. I have a very full life, with a full time job, two children, a house to maintain, and a dog to feed and walk. Not to mention a number of other interests and hobbies I would like to persue. When I am fatigued, it can be as much as I can do to get up and dressed without feeling like I could do with a sit down. Most of the time I can ignore the feeling and keep ploughing through, but it takes the joy out of everything, and makes every task arduous. It's like you spend every moment walking through treacle!
The national association for crohns and colitis has recently completed a four year research project on fatigue in ibd, the results of which are published on their website; wws.crohnsandcolitis.co.uk
They have created a questionnaire which you can fill in to help measure whether you are suffering from fatigue and to what degree it is affecting your daily l life. I found that I scored fairly highly in this, probably not surprisingly! I guess what I should do, is take my iron for a week or two, and then fill in the questionnaire again, and see if I have improved. I'll keep you posted on this.
Of course, the other question is, why am I anaemic? Is it my diet, as I am currently on low residue to try and reduce my symptoms. Is it that my bowel is not absorbing the iron very well, or is it that I am losing blood? (Of course it could be a combination of all three of these!)
Saturday, 5 July 2014
Fighting fatigue - Is it IBD or The drugs?
I have been taking Mercaptopurine for nearly a week now, in combination with injections of humira. It takes up to six weeks to see any effects from mercaptopurin. It is an immunosuppressive, and works by decreasing my white blood cell count, thus reducing inflammation throughout the body. One potential downside of this is that it is a bit like inducing anaemia, and can therefore make you very tired.
The past few days, I have indeed been very tired. I can't ever remember feeling so tired before! Well, at least not, when I have been trying to work at the same time! Obviously I was very sleepy immediately after my subtotal colectomy last year, but I could sleep all I wanted then as I was in hospital.
Trying to go to work, drive, hold intelligent conversation, look after two small children and do all my day to day tasks is incredibly difficult when you are feeling fatigued! I wonder what colleagues think of me when I am like this? It's not obvious that there is anything wrong with me, which means there isn't really any excuse or explanation if I don't do my work quickly or to a good standard.
The past few days, I have indeed been very tired. I can't ever remember feeling so tired before! Well, at least not, when I have been trying to work at the same time! Obviously I was very sleepy immediately after my subtotal colectomy last year, but I could sleep all I wanted then as I was in hospital.
Trying to go to work, drive, hold intelligent conversation, look after two small children and do all my day to day tasks is incredibly difficult when you are feeling fatigued! I wonder what colleagues think of me when I am like this? It's not obvious that there is anything wrong with me, which means there isn't really any excuse or explanation if I don't do my work quickly or to a good standard.
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