Body in Wrong Time Zone?

[Geoff]

Been ages since I started a new post on the Forum, almost forgot how to do it!
Anyway bear with me as I try and get this off my chest. A little bit of background - I am 20 months into a 2 year RTX cycle and going along OKish, cannot get below 5mg of pred but hey, thats not the end of the world.
The situation is that although I only work 2 days (cant do any more) I am struggling to get on an even keel in my own time. I guess my body could be trying to tell me that even 2 days is too much, but I have always thought that when it came to WG, I had the upper hand. (Doh!)
When I go to get up in the morning its a very ardous business, simply have no energy. I then crab about all day and then bizarely come the evening, especially after a nice dinner I feel OK and can keep going into the evening.
Am I just storing all my spoons and then finding I have a surplus at the end of the day? Is my body clock all at sea?
I take my pred at breakfast, doesnt everybody?
My next IV is in 3 weeks time and maybe the RTX effect is wearing thin with me. Dr Jayne told me at my last clinic that I appear to be showing a 'reaction' to the drug and am most likely to flare in the future. They are going to give me a synapthem (sp?) test before the IV to check on my adrenal glands, maybe thats the answer? They are simply crashed out after 5 years of pred since my DX.
Anyone got any thoughts or suggestions? :unsure:

[pberggren1]

So much about our bodies is unknown or unexplainable Geoff. I hate mornings as well and it takes me a long time to get ready then by evenings I feel I have more energy then cannot get to sleep. I have no idea what causes this. I think it is the accumulation of med side effects over time and our emotions.

[Geoff]

Its a scary thought Phil if you were to visualise all those pills we've popped since DX!! and yet there's no alternative (well there is, but lets not go there!) I do feel as tho its all coming unravelled, a little bit at a time just now..

[pberggren1]

Ya, I know in my case my long term prognosis is not good. I try not to think of it too much but when the breathing gets so bad again like it has recently it is hard not to think about the what ifs.....lung transplant, stents, lasering, cutting, not waling again, etc. I just try to take one day at a time and be thankful for what I have. I have you guys on this wonderful Forum, I am still able to leave the house, and have great parents and friends that take care of me.

[pberggren1]

Sometimes "it is what it is."

[Debbie C]

Geoff,I feel the same way some days. I wake up with all these things I plan to do and don't seem to get much accomplished at all. I take my pred with breakfast also and I just want to lay down for about a half hour afterwards. Then it seems I have to push myself to get things done. It's got to be the meds. What kind of reaction are you getting from the rtx and why do you have to get it so often. Maybe your body is getting used to it and it's not doing as well as when you first started. Hope your adrenal glands are o.k. and that you get some enrgy back soon. Maybe they should not give you this next round of rtx ?? Keep us posted and hope you feel better soon:hug2:

[annekat]

I'm generally pretty draggy in the morning, too, and give myself permission to be, unless I have a commitment to be somewhere, in which case the coffee gets me out the door and I usually rise to the occasion. But I can easily use up my spoons by late afternoon, and I make few commitments for the evening hours. I may have a second wind in the evening when home by myself, but anything that involves other people is likely to wipe me out at that point. I haven't taken RTX so can't comment on that, but do wonder about the state of my adrenals... for me it's been about 2.5 years on pred, less time than some, but enough to pretty much trash those glands, I'd think. It does make sense to me, Geoff, that you might feel some energy in the evening after being careful with your spoons all day long.

[Alysia]

Hi Geoff,
my "cycle" is the opposite. I have more energy in the morning and as the day proceeds "my battery" is becoming less and less, until in the late afternoon or evening I am "depleted".
when I saw your title "body in wrong time zone" I was smiling, because I though of some "weggie's time zone" :wink1:
I think it can be related to the pred. pred affect me differntly then others. it never diturb my sleep and i never gained weight with it. when i was on 60mg i was sleeping with no problem, and a lot. so I think that in the morning i don't have much pred inside, still have some energy and then as the day proceed and the pred from breakfast is starting to work, it makes me tired plus the working of the day. maybe pred makes others being with more energy, so as the day proceed, the pred start to elevate their energy.
my hypothesis. I don't know if it can "hold".
anyway I wish you to feel well, no matter what hour is it :smile1:

[Alysia]

Ya, I know in my case my long term prognosis is not good. I try not to think of it too much but when the breathing gets so bad again like it has recently it is hard not to think about the what ifs.....lung transplant, stents, lasering, cutting, not waling again, etc. I just try to take one day at a time and be thankful for what I have. I have you guys on this wonderful Forum, I am still able to leave the house, and have great parents and friends that take care of me.

http://www.bubblews.com/assets/images/news/1826782333_1367925336.jpg

[mishb]

I have the perfect solution for everyone - and especially for you Geoff :thumbsup:

You have to move to Oz.
Geoff you have to come back and visit your mum again.

My reason - when it is morning where you are, it is night time over here and visa versa :thumbup:

[pwc51]

Hi Geoff,

Interesting thoughts. My body clock has been all over the place since I was diagnosed in 2009. It was never brilliant before but I put that down to the aging process! Now I start my day at 6:30am with a selection of tablets, always slow but I aim to be heading to the office by 8:00am. If I am lucky I am home just after 6pm. On the whole I manage but some afternoons I would love to drop off to sleep! Come the evening I am usually fine, especially if I go out, but if I stay at home I find I nod off after my evening meal (missing anything I might be interested in on the TV) and then, come midnight, when I go to bed I cannot sleep. Fortunately I can still manage the 5 working days but some weeks are harder than others!

I am intrigued at the minimum pred levels we reach and how that minimum level is determined - I have just reached zero again but I have to say I felt better when it was nearer to 10mg. I think this may be the topic of another thread.

Peter

[mandy]

hi all. first time here. my dad was diagnosed with Wegner's about a month and half ago. his kidneys were affected, but after only 2 sessions of dialysis and meds (cyclophosamide) he is doing a lot better. his kidney levels went from 9.8 to 2.2 up to last wednesday. it has been a difficult change for him, from doing almost anything to being weak and careful now. but thank God he is still here. We are from Trinidad in the caribbean, and Wegners is rare in the Caribbean, but the doctors at the private hospitals were great and continue to work with him to ensure a normal life as possible. my heart goes out to all of you and i was able to read about so many who are worse than my dad. i wish that there was a cure for all of u. life is so unfair at times but i wish everyone the best and hope u get the best treatment possible.

[pberggren1]

Welcome mandy. I am glad you found us and that your dad got diagnosed before things got worse. Please keep us posted.

[annekat]

Welcome to the forum, Mandy. I'm glad to hear your dad is improving so nicely. We also have a New Member Introductions section where you can start your own thread and more people might notice your post. We also have a Weggie Forum members map link at at top of every page, where you can place a marker for your dad where he lives and can see the distribution of other members around the world. Keep us posted and feel free to ask any questions.

[Geoff]

Geoff,I feel the same way some days. I wake up with all these things I plan to do and don't seem to get much accomplished at all. I take my pred with breakfast also and I just want to lay down for about a half hour afterwards. Then it seems I have to push myself to get things done. It's got to be the meds. What kind of reaction are you getting from the rtx and why do you have to get it so often. Maybe your body is getting used to it and it's not doing as well as when you first started. Hope your adrenal glands are o.k. and that you get some enrgy back soon. Maybe they should not give you this next round of rtx ?? Keep us posted and hope you feel better soon:hug2:

Hi Debra,
I was expecting 'fireworks' when I had my first RTX IV but it was like a damp squib! It was 5 to 6 weeks before I felt any improvement. Then after 8 months I had to up my pred to 30mg and my Doc said it was because of my size (6ft 4ins and 'chunky') that meant the frequency of IV cycle was too great at 6 months and so it was reduced to 4. Right now its like having a cup of tea with no reaction whatsoever, but as I stated before, my doc is a little perturbed by some of my bloods and informed me that I am very likely to flare again.

[Geoff]

Hi Michelle, I love your Aussi logic!! I'll check with my doc and see if he will sign me off and get the NHS to finance the trip!! Funnily enough I asked him last year if it would be OK to make the big trip and he said yes, "It would be cheaper than giving me the RTX"!!

[Debbie C]

Michelle, I'm ready to come there also, I can sleep on the plane !!! Seeing Austraia is on my bucket list but I'll probably kick it before that happens.Unless I find a rich man,us Americans don't take holidays you guys !!!

Geoff, Can they up your preds even more to prevent a flare ?

[drz]

Chronic fatigue is a typical problem with Wegs and I often experience it. My doctors have said there are many reasons I may be fatigued due to my meds, blood sugar variations from diabetes, kidney and lung damage, history of anemia, and other various problems related to Wegs and other health issues. I often have to adjust my schedule or change my plans due to being too tired to carry out my plans for the day.

Some times I have periods where i can't sleep at night even though I may feel tired. This often seems to occur in early hours of day when I should be sleeping. Sometimes when I feel too exhausted to do much I can nap real well during the day. Some times not and I try drag through the day till I fall asleep reading or trying to watch TV or reach point where i can nap. Maybe these naps make it harder to sleep through the night but I find my periods of feeling awake and energetic enough to do much often only last a couple or hours or so. I don't have any regular pattern where I feel more energetic but think some of variations in my energy levels are related to my meds, other things in my body cycles, sleep patterns, etc.

A regular pattern of higher energy might allow one to adjust their activity schedule and maybe even their work schedule if lucky. I am lucky to be retired so don't worry about trying to fit in regular work schedule although I consider my many medical appointments my regular work now and try real hard to keep all my appointments.

I know my fatigue decreased some as my anemia improved and my kidney function and lung function also recovered a bit and maybe some from having my pred level tapered down to 5 mg per day. It would be nice to have more energy but kind of think any great improvement is not very likely to happen for me and many others on here.

[Alysia]

my doc is a little perturbed by some of my bloods and informed me that I am very likely to flare again.

Hi Geoff,
why is your doc thinking that you are likely to flare again ? what are his indications ?
it there something that can be done to prevent it ?

[Geoff]

Geoff, Can they up your preds even more to prevent a flare ?[/QUOTE]

Yes Debra, upping my pred, as we did early this year is an option, to "put out the fire" I like to think, but after 5 years of the stuff I had set my goal on being pred free by the end of this year, however; when one of the consultants spoke to me whilst I was waiting in clinic she remarked that 5 mg wasnt too much to worry about (in the grand scheme of things) and of course she was right. Compared to many others on this forum I am very fortunate.

[Geoff]

Some times I have periods where i can't sleep at night even though I may feel tired. This often seems to occur in early hours of day when I should be sleeping. Sometimes when I feel too exhausted to do much I can nap real well during the day. Some times not and I try drag through the day till I fall asleep reading or trying to watch TV or reach point where i can nap. Maybe these naps make it harder to sleep through the night but I find my periods of feeling awake and energetic enough to do much often only last a couple or hours or so. I don't have any regular pattern where I feel more energetic but think some of variations in my energy levels are related to my meds, other things in my body cycles, sleep patterns, etc. .

Yes DRZ I recognise the pattern oh so well! Because at first I was passed fit to work and needed the dosh, I found that taking a sleeping tablet was the best way for me to get into a reasonable cycle of life. By the end of the day when I was working 5 days a week I was quite tired and yet relied on the tablet as I was afraid of trying to drive to work in a sopophoric state. Before DX I did fall asleep at work and was gently woken by my boss to go home!! The fact that I was 56 probably saved me as he didnt think I had been out all night on the booze!!
After being off work all last year I have resumed but find 2 days all I can cope with. I am tapering my sleeping tablet and feeling better as a result. Its all a question of Balance as someone was heard to say....

[Geoff]

Hi Geoff,
why is your doc thinking that you are likely to flare again ? what are his indications ?
it there something that can be done to prevent it ?

Hi Alysia,
It was my PR3 indicator which Dr Jayne said was higher than he would have liked to see at 21 months into my 2 year cycle. He said I was developing a reaction to RTX and therefore more likely to flare. In a couple of weeks time the Cambridge Vasculitis Support Group will be having their annual get together and one of the doctore from Addenbrookes will be talking about the side effects of drugs and in particular Retuximub. It sounds very interesting and of course also gives me the opportunity to meet up with fellow Weggies friends and hopefully meet some new ones!!