Fatigue

[garden41BULBS]

The impact is hitting home now. I have been on 500 mg hydrxy for 10 days now. Still feel tingles, and feel weary, especially in  my legs.

Am I on a high dose?

[bruddery]

Sorry to hear of your fatigue - it can hit so suddenly when least expected!! I guess it's all a new learning curve - as time goes on you will recognize that just sometimes you have to give in and rest. I used to say my ET and fatigue began to work in unison. I work full time 5 days a week. Fatigue would many a time kick in on the Friday and I got the chance to re-charge over the weekend.ready for work on the Monday. Now hydroxyurea -500 is not high. I used to take 1500 - 2000 per day problem was when they needed to get to 2000 Other bits arose too. I tolerated it really well generally - was diagnosed 2007 and given it from day one. Was given ruxlitinib just a couple of months ago. Hydroxy is a good option and you do get used to the fatigue learning for the most part how to spot when you need to rest. But there are days when it can just hit. Take your time adjusting. Good luck Bruddery

[Hidden]

I wouldn't really say so. I take 1000mg daily and 1500 on Sat and Sun. I don't know and I think many of us are not sure if it is the condition or the hydroxy which causes the fatigue and other aches and pains. In my case I think it is more the condition as my legs were unbearably painful at night and weak during the day but after starting on hydroxy there was a drastic improvement.

Strange to relate though, this past week it came back with a vengeance and last night was a bit "sair to bear" as we say in Scotland. I have been on antibiotics for chronic bladder infection though so that may have had something to do with it. The fatigue though came with the hydroxy and this too has been awful for the past week. I think we walk a fine line keeping our bloods in balance and each deviation is felt by us in some way.

However, many of us here agree that there are good phases and bad phases. The bad phases always come to an end but at the time you think it never will. It took, with me about six months on hydroxy before I fully felt the benefit. Stay with it garden4. You will feel better in time and learn to deal with the fatigue in a way that bests suits you. Kind regards and empathy to you. X

[francesb]

Hi, I think 500 is the lowest dose, I've been on Hydroxy about three years, sometimes 2000mg per day every day depending on blood results, 500 is the lowest dose I've ever had ie one capsule.  Currently on 1000 for 4 days and 1500 for three days. I take mine last thing at night hoping to sleep through any drug related fatigue although to be honest don't know if fatigue is the condition or the medication.  I hope you soon feel better and am sure you'll find ways to manage the fatigue, I've changed my life around a bit to deal with it eg I don't socialise in the evenings when I'm most tired, but do have some lovely lunches out instead!  Best wishes, Frances.

[Spirit123]

No 500mg is a relative low dose. You may be fatigued due to the condition not the pills. What is it you have? Is it ET?

[garden41BULBS in reply to Spirit123]

Yes ET. Aged 69. Does anyone

Apply 4 attendance allowance I

UK?

[Paul42]

Hi

Fatigue is common with all MPN's. From both meds and the condition itself.

I am sure you are but keep well hydrated, try and take some excercise, i know it sounds the opposite of what your body wants to do but it does help. I find excercise in a morning is the best for me. Not saying you need to run a marathon, but a brisk walk if possible, anything helps.

All the best

Paul

[Inca]

This has come up just when I am feeling my lowest very fatigued,yet my blood is better than for months.Saw consultant recently who is delighted with all tests and results.I asked'why?'He replied that he can only try to control the blood counts,he cannot control the fatigue of the P V or the Hydrea.....so it goes with the job  so to speak!!!!!Paul is right,morning exercise,for me necessary,dogs ,horses make it obligatory!!!!Stress tho ,of an impending exhibition is worrying me,tho I love my work,stress is a killer and makes fatigue worse especially as I must rest so often,then the mind goes into overdrive.....and so on! We have to accept it all,good luck with it all everyone,thank goodness for this site  to  express worries .Best Wishes.

[Helpatlast]

It is early days for you as it does take some time of your body to adjust to what is powerful meds - but remember HU is a friend even when it doesn't feel like it because it does keep us all going and safe and sound.  Like others I have higher doses at the mo 1000 mg each day, some checkups I go up to 1500 mg per day and when I started 10 years ago 2000 mg per day so yes your dose is a lower one which is good as your body will adapt round soon. But fatigue is something we adapt too as HU and MPNs do both bring fatigue with it but as others have said you will become accustomed to how it goes and know what is good for you - like others I find out in the morning for gentle walks with my dog even when feeling lousy does you good and a lot of the MPN consultants advocate that.  Lots of water too!!  Keep posting here we are all here for support,  all the best. 

[Shortcyclist]

I have PV and take 500mg of hydroxycarbamide daily. I get fatigue pretty much daily, though it varies in severity. I had it for a couple of years before I was diagnosed last September. So I think it isn't necessarily related to the med. Exercise and drinking lots help.