On November 5th I had my last dose of Mehtotrexate, then had a rubbish start to the week, feeling really tired and dizzy etc. GP thought I had an infection and gave me an antibiotic, I felt better at the end of the week and over the weekend.
On November 12th I had my first pulse of cyclophosphamide at Addenbrookes. No problems, and on Tuesday and Wednesday I felt better than I had for ages, and got lots of different things done. Today ( Thursday) I am tired, cross, dizzy etc again.
So - after effects of cyclo, infection or doing too much over the last two days? It is really hard to work out - and to know what action to take......
Any advice, or experience will be very welcome.
Written by
BronteM
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I used to find that the cyclophosphamide affected me worst the day after infusion. It made me feel washed out/tired. That feeling gradually subsided over the following days. Certain infusions affected me worse than others and on other occasions the after effects were quite mild. However do know there were days between infusions when I felt good and as you say got a lot of things done. I then seemed to pay the price for doing too much the day after. Maybe that is what has happened to you in this instance.
I do hope it is just that and you are feeling better soon.
As Chris says, when we feel good (or at least better) we think that we can take on the world - so we try, it feels good at the time, but it isn't the smartest thing to do (as we soon learn). The Cyclo and the Pred are vicious little so-and-so's. Our bodies have to get used to the "insult". Sometimes we get a high, and sometimes we don't.
From feeling as if I was at death's door I spring cleaned my bedroom and colour co-ordinated my clothes in the wardrobe. It all looked good, I finished up looking and feeling terrible.
Try to rest between the jobs you feel that you can do. A little at a time. I used to go to bed EVERY afternoon for at least an hour. Some days will be better than others.
If you feel that it may be an infection then seek some medical advice.
What I TRY to do!! and this is training one's self again from a Pain Management Course I went on, is to PACE yourself! and how to MONITOR yourself !
This is hard at first but hopefully a good tool.
1. You need to see and write down what you do every day. This maybe a painful boring thing to do but you only need to really do it once.
2. Now when by yourself MONITOR yourself if suffering from pain or tiredness or both. go through your list above and if it is a standing job, time yourself standing and see how long it is before you feel pain or tiredness. Write these times down and then when you do an activity stop before pain or tiredness or both kick in.
3. Now you know how long you can carry out an activity you need to PACE yourself so pain,tiredness does not kick in.
So for example: Cooking dinner - I now prepare all veg, peel chop etc. then season meat (if you eat it) get everything ready for the evening meal set the table etc... then in the evening all you have to do is cook it. If the cooking times are too long think about using AIDS like a stool whilst cooking.
Sometimes I double quantises of easy foods like Bolognese, soup and freeze half for the BAD BLACK days and pop it into the microwave and dinner is ready.
I also make huge pots of stock veg,chicken and freeze them down into the small plastic £0.99p shop containers, this I also do with gravy.
Hope this makes sense and may some ideas will help. Look after yourself! you have to come first!
Well I have to say, everyone's advice us great, but I have to say I like Anthony01's,I will be giving that a try myself.Hope you get the much needed relief soon, Sandy.
Thank you so much for all the good advice. I have been feeling so dreadful for so long that having any good days means that I definitely overdo things! I will definitely try to pace myself better|
It seems too exciting to have a clearer brain, and to have lost most of the side effects from the MTX.
We moved house at the end of October, and that has also been horrendous ..... two days after we moved in the heating collapsed and turned out to have fundamental problems....three days fo plumbers have been the result.
The sellers washing machine had been leaking into the back of the kitchen units for months - new units.
The cooker was illegally wired - electricians running new leads behind units...
Oh, and we can only get phone or broadband if we go to a neighbour. So overdoing it has been pushed into the system whether I like it or not.
The good news is - as of last night we have heating, and I cooked supper on my newly installed cooker.
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RIP Dad
I am going mad with my symptoms! Help
I need advice for my seven year old daughter , we are off to Gt Ormand st hospital this Monday as local hospital think vasculitis
