Feeling dreadful, is this normal?

[dizzy49]

I have vasculitis in my lungs and have had my 7th Cyclophospamide just over ten days ago. I feel really weak and no energy at all. I have been ok up until know, diagnosed about Sept/Ocgtober and I thought I was doing ok. Would be grateful for any information. Thank you.

[John_Mills Volunteer]

Are you having any other drugs as well as Cyclophosphamide ? Where are you being treated? Have you been given a name for the particular type of Vasculitis you have? Sorry so many questions... but they are important to get the whole picture..

Susan

[dizzy49 in reply to John_Mills]

Hi Susan,

I have just reduced my prenisolone down to 10mg, (At the start I was on 75mg). I aqm on Dapsone (antibiotic), fruosemide, 120mg, alfaD 25 micro, Lansoprazole 30mg. I am being treated at the Royal Liverpool Hospital and my consultant is Dr Harper, who I believe specilises in Vasculitis, she hasn't told me what type I have, I only know that after having pnuemonia, they said I had vasculitis in both lungs. They have screened my ears, eyes and on Monday, I am going for a kidney scan.

I have felt unwell in the past but yesterday and today I haven't got the energy to walk. Just feel really rotton. sorry to moan

[LynneJ Vasculitis UK Volunteer]

Hi Dizzy

I am sorry to say I can't really remember it was nearly three years ago when I finished my my cyclo. (I have fibrosis on one lung from the vasculitis.) I know I felt rubbish with no energy while I was having the treatment. But it had to be done!!!!

If you are very worried check with your consultant perhaps they will give you an x ray.

They do like to know how you are feeling. I used to think they were ignoring me but I have come to realise that they take it all in are are sometimes just thinking out.

I just wanted to give you something to be aware of.

My rheumatologist wanted to put me on methotrexate when the cyclo was finished but my chest consultant was not keen as he said it can in some cases cause fibrosis. It might be something to keep in mind.

I would just say that not all consultants agree but I chose to go with the advice of my chest consultant. I am in remission at the moment and taking Azathioprine. I have MPA so all this might not apply to you.

Hope you feel better soon

Lynne

[dizzy49 in reply to LynneJ]

thank you Lynne for taking the time to reply to my question, your response was really helpful, sometimes you just feel on your own, despite having a good husband and family. It is good to hear you are in remission, I hope you continue to remain as healthly as you can.

Thanks again, Jacquie.

[LynneJ Vasculitis UK Volunteer]

Happy to keep in touch Jacquie.

It can be a bit lonely.

No matter how supportive your family is you really don't want to worry them.

Feel free to message me anytime. I can only speak from my experience and am feeling a lot better after 3 years.

The worries get less as time goes on. I just go from day to day with my fingers crossed.

I think you are at one of the best hospitals.

So things should improve. I will cross my other fingers for you!!!

Lynne

[dizzy49 in reply to LynneJ]

Hi Lynne,

That is really kind of you, I have been quite optomistic but I have just gone right down the tubes over the past couple of days. I do think I have a really good consultant and they did find the vasculitis quite quickly, I went into hospital in the July, sent home and back again in August when they identified what was wrong with me. I just hope that my kidneys are ok :(. Thanks again Lynne, I will be in touch. Jacquie x

[PatriciaAnn]

Hi Jacquie

You say you have just reduced your Pred. If you have come down too quickly that can cause you to feel absolutely dreadful. Just a thought. It seems to suit most people to come down in 5mgs until about 20mgs and then it can be a very different story. Sometimes coming down in 1mg and sticking at that level for a week or so is a good option, or say 20mg day one, 19mg day two, back to 20mg day three and so on and do that for a while. The doctors like to get us off the Pred, our bodies sometimes have other ideas.

PatriciaAnn

[dizzy49 in reply to PatriciaAnn]

Thanks for you helpful response, I don't think I have come down too quickly but as it is all new to me, as for many on this site it is so good to get other peoples experience. I am not seeing my consultant for another couple of weeks but I will ask her about my pred reduction. Thanks again for taking the time to get back to me.

[anntc]

Hi Dizzy I am just ahead of you in the treatment and Dr Harper is my specialist too. I had my eighth cyclo on thursday which is why I haven;t been on the computer. I was ok until I had my 7th and I was dreadful for the full week on that occasion. This time I have been pretty bad for just three days, Ring Sarah she will talk to you about things. I came down with the same preds as you. at the same rate. I also had an eye infectiion. My usually reaction was sort of ill but not sick before and the 7th I was feeling sick and was sick once but I just felt realy, really ill. Just take care of yourself. Ann

[dizzy49]

Hi Ann, I have been so lucky in lots of ways because I was ok on my treatment up until the 5th when I felt a bit rough for a week or so but this time I am just sleeping, feeling really weak and struggling to walk. It is helpful to know that it was 7th when the sickness etc., started to kick in for you. I am at the hospital on monday for a kidney scan so I might phone Sarah before I go. Thank you for responding to my question. I wish you well for the next couple of treatments, hopefully when the treatments are done, we can start to get better..Jacquie xx

[anntc in reply to dizzy49]

HI jACKIE We have a support group based at Liverpool hospital. Our organiser is keith Quinne we are meeting in March. Good luck with your kidney scan let me know how you are getting on and if their is anything I can do to help. Ann

[nannie]

Hi Jacquie, I hope your kidney function tests prove to be okay, But don't dispair if they find a problem. It might mean more tablets and another consultant but keep your spirits up. I have had WG for 10years with lung and kidney problems. It seemed alarming at first but although my kidney function is poor, it is stable.

My worst problem is the fatigue but I have learned to pace myself and if I can't carry on I stop!!!

Find yourself some hobbies that you can enjoy curled up in a chair, or even in bed. I embroider, read and spend time on the laptop.

Please let us know how you get on. I'm here for you if you need me, Christine x

[dizzy49 in reply to nannie]

Hi Nannie, kidney fuciton is fine, I was feeing rough because of a water infection and inflammed gall bladder. I have only just got out of hospital yesterday and wanted to thank you for taking time to respond to my question.

You are right about pacing yourself I am trying to get the hang of that after charging around all over the place, LOL.

Thanks again really apprecaite you taking the time to answer me.

Jacquie x

[JacquiM Volunteer]

Hi Jacquie, I agree with Christine about the fatigue thing, it can be terrible on some days. I also have poor but stable kidney function. I wouln't worry about moaning sweetheart, I think we are allowed to do that sometimes, it can be a rocky journey this so let it all out as it is always good not to bottle it up.

Hope your kidney scan went well and let us know how you got on. Take care

Jacqui M

[dizzy49 in reply to JacquiM]

Hi Jacquie, wanted to thank you for your response, after posting my question I ended up going into hospital, they found that I had a water infection and inflammed gall bladder. At least I now know why I felt so rough. Kidney scan was fine thankfully and I am now feeling much better, just two more treatments to go, thank you again for taking the trouble to post a response. Jacquie x

[fillyhome]

Hi Jacquie, I am also a vasculitis sufferer under Dr Harper at The Royal hosp. I finished my cyclo treatment just under 12 mnth ago, and I can only say every treatment was diff. I was sick after the very first one, and would be laid up in bed for a week. I would then have a week feeling quite well then bang, down again. Sarah Hardy ( vasculitis nurse ) is excellent with any queries or worries you have, and is always at the end of the phone to talk to. Please give her a ring and she will advise you what to do. Do not suffer alone !!!. Good Luck for future treatments. PS My vasculitis is WG with Kidney damage. Take care hunni XX

[dizzy49 in reply to fillyhome]

Hi, thank you so much for resonding to my question, shortly after posting my question Sarah phoned me after seeing my blood test and asked me to come in and see her, I was admitted on the same day, they found my gall bladder inflammed and a water infection, kidneys, thankfully are fine. Thanks again for taking the time to respond. Take Care, xx

[braindamage]

Hi Dizzy. many have been through the emotions that you are going through. Please believe me, it does get better albeit slowly.

The dreaded Pred! It does help despite its side effects and the sooner you can establish a medication routine that works for you, the better. Everyone's different in that respect. Listen to your consultants and ask questions if you're not sure or don't understand anything.

I was diagnosed in Jan 2007 and my wife was told I probably would not survive! I'm still here and fighting (at 67 years old!)

Concentrate on the 'good days' however infrequent and try to ignore the bad. Your life may change depending on your progress but adapt and accept it.

You're definately not alone. If you're on FB, check out the facebook.com/groups/1635100... Vasculitis site?

I wish you all the best on your journey.

[dizzy49 in reply to braindamage]

Hi thank you so much for repsonding to my question, I now realise why I felt so dreadful, had a really bad water infection and my gall bladder was inflammed. I have only just come out of hospital after spending just over two weeks in there. They have also found a hole in my heart, if this was an MOT I would have failed it, lol. Thank you for the face book group, I have found that really helpful. Thanks again for your helpful comments. Best wishes to you,