Changed over from MTX & Azathioprine with prednisolone to cyclophosaminde with prednisolone due to a recent Wegners flare. Been on 150mg daily of oral cyclophosamide along with steroids. The breathlessness, nose bleeds and blinding headaches have improved vastly, blood inlfamation markers coming down slowly too however the last week or so I have been feeling awful. Best way to describe it is like a hangover, achy, no energy, unable to concentrate. Would this be the cyclophosamide ? Going back to see Doc on 9 May he did say hopefully only a 3 month course but as blood results aint back to normal I think he'll keep me on it a while more.
Regards
Brian
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BrianCrelling
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It might well be the meds. Can you ring your consultant to check? I don't have WG so am no expert but I was on cyclo and didn't feel much different although I was rubbish at the time anyway.
If you are getting worse I would definately get a medical opinion. I am sure someone will give you a more detailed answer soon.
I had a similar reaction to the cyclo and high dose steroid mix, Brian. Felt 'wired', out of it, dramatically tired, lacking in concentration, really awful. Are you on high dose steroids? I felt a little better once the steroid dose was reduced to 40mg but even better once the cyclo was stopped. Worth reporting how you feel to your consultant and getting his advice? He may have heard all this before (my consultant had) and be able to reassure you. Conversely, he may wish to change some aspect of your meds.
Sorry you aren't feeling so great. Like Lynne, I was on cyclo (infusions) and high dose steroids at the beginning when I felt dreadful anyway. However, when I flared, after four years, I had a short sharp course (couple of months) of oral cyclo and 40mg Pred. Apart from the reducing symptoms of the flare I didn't feel any different than when I was on the CellCept. As Lynne and Ayla say, ring your consultant. Some of these things just do not suit us. He may want to change the meds or the dose. Don't suffer in silence - you won't get a medal (lol). Feel better soon.
Hi Brian, also sorry you arnt feeling great and agree to talking to your consultant. I have Cerebral Vasculitis and had oral Cyclo for about 10 months with high dose pred and yes felt awful but initially but that was the beginning of my Vasculitis anyway. Because my white count was extremely low with the infusion I remember having to stay in the house for a long time due to risk of infection, but that passed. I then went onto to Cellcept etc I cant comment on the oral as I havnt had it? It is 4 years since my initial diagnosis and my inflammatory markers have never really been normal although hugely less than at the beginning!
I agree with PatriciaAnn re 'dont suffer in silence' and would definitely not wait until May 9th, I would contact your consultant now. One thing I have learnt is to have a good relationship with my consultants secretary or at least if you cant talk to them, email them. They should be pretty good at getting back to you?
I couldn't take the cyclo tablets and had three lots of infusions. 6 months, 3months and 6 months. It's really hard to feel it's doing you good when it makes you feel so bad, but there is light at the end of the tunnel.
I have had WG for 10 years, some bad times some better times, but I'm still hanging on in there! I get by with a sense of humour and the determination that this won't beat me!
Thanks for all the support, just got my latest blood results and the inflamation markers have rocketed so I will call consultant today. This is my second and worse flare since i was diagnosed 7 years ago so all things considered I have been extremely lucky.
Saw GP yesterday, she rang the hospital. Upshot is I stop the cyclo over the weekend, blood test and seeing rheumatologist on Monday. Fingers crossed its just an infection and nothing more sinister.
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