Hope everyone is doing as well as possible, if not I hope things improve for you.
Question for the ladies....
I'm 100 days into Hydroxycarbamide,
over the past 2 weeks I have noticed a Pain in my Left Hip Joint. Comes and Goes but after spending 2 hours Ironing,😬 I could hardly walk 2 days ago. As we all know us ladies like to pack away all the Ironing Gear, I became trapped in my kitchen. Just couldn't Weight Bear on Left Hip.
YIKES ☹️ absolute Reality Check until I
literally hobbled to my bed. The stairs felt like Everest.
Pain gone next day & Femur working fine.
Cleaned Large Lounge Window Inside & Out yesterday including all of Front Door etc. Said a silent prayer regards Hip Joint, I was on step ladder, all OK.
Tired but Walking , I'm now a little concerned that just maybe Hydroxycarbamide may be the Culprit.
I really do not need Hip /Femur Problems. Still getting my head around ET & MF.
😊 Wish ET would take his pal MF Home with Him.
Anyone else experiencing similar Pain please.
I swim,walk, garden have Exercise Bike, run the home etc, etc hence not Inactive. Yes the Fatigue Gets Me as it does All of Us.
Husband said get a window cleaner, they just do not make the glass sparkle and definitely don't do the framework. We are fortunate to have the upper windows that we can swivel.
Beautiful Day Here on the Coast of Somerset, hope your day is good wherever you are.
I'm looking forward to Newcastle Meeting. We intend to stay few days and explore the area, Cathedral is Beautiful apparently.
I used to live in Harrogate Yorkshire many moons ago, never made it to Newcastle. Here is the Opportunity to Explore and Relax in Hotel. 😀
Take Care Folks
Mary x
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pontygirl
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I have been taking hydroxy since July and have one bone on one elbow that is really sore. But I don’t know if it really started with the meds or if it’s to doing with ET, or something else entirely. I try not to blame everything on my condition or the treatment - although it is nice to have something to blame! 😉
I Wouldn't Want to Blame Everything on my ET & MF.
However it would be nice to know if others especially females have had a similar experience..
Unlike Males, females suffer with Osteoporosis for various reasons.
With the mix of Chaemotherapy and possible Skeletal Difficency in the female gender, it would be nice to know if other members have experienced the same.
I would be most grateful to hear from anyone that has suffered anything similar.
I seldom ask questions on the Forum, hopefully I may get some answers to compare with my experience.
You have my sympathy for the Pain in One Bone and just One Elbow, it could at least be a matching Pair of Bones😉
I wish you well on your journey with Hydroxycarbamide.....
Hi Mary - oh I wasn’t dismissing your question - at all! I think hearing from other women would be most interesting. I was just trying (not too successfully I think!) to be a little funny. I have a lovely long-time friend originally from Somerset - she goes back to visit every year. Her photos show it as such a beautiful place.
Yes I am having issues with joints..my fingers at night become so swollen and the joint of the left index .. annoy touch the finger at all. I have been taking 500mg daily of Hydrea. I have an appt on 9/11 to request the blood work to include uric acid to rule out any type of gout possibility. I am I. Washington State so I am able to use cbt oil and salve to put on. Relieves for short periods but when I take 800mg of Motrin this seems to give me more relief.
After our Almost Clash Yesterday, it has been on my mind since.
Apologies I didn't get the humour intended, for me it didn't feel funny especially when leaning on kitchen cabinets as I couldn't walk.
However I have been reading through all your previous posts and realise that you are " a good guy" that just got it wrong in my case.
I'm being brutally honest here, I would love to step back pre 18th May 2018, when given MF Diagnosis after BMB. I was much happier with ET, Diagnosed April 2018...
Like many on here my world was rocked and felt I had been given a
Use By Date!!!! Circa 3/5 years....
I have moved on a little since that day, but for me the Quality of Life is Important. This is borne out of many years of nursing until retirement not so long ago.
My opinion is that, if we are to live with ET or MF, which we have to.
At least let our Quality of Life be Reasonable!!
Hence my panic to think I have yet possibly another untoward symptom developing with my hip, which is common in ladies without the added ingredient of HYDROXYCARBAMIDE thrown into the mix.
Hence I'm just a little ahead of you in my journey timescale. Took a lot to get my head around ET in April..
Eventually I realised with good care that I can live with this, ok let's get on with it!!
I was appalled at the thought of taking Hydroxycarbamide 1000 mg daily and Refused. I could do this without Chaemotherapy, nursed far too many suffering with the illness and after effects of Chemotherapy...
5 short weeks later I find I have MYLOFYBROSIS and so wish I could step back to just ET😬
Still not on any medication but had a long chat with my wonderful Haematologist and decided to give Hydroxycarbamide a chance.
I was already on Clopidagrel from 2005 after a TIA due to a severe Migraine. Still sat on HU for another 10 days pondering!!
Then started the drug fearful of side effects just like you.
I'm happy to say I tolerate it well and after a difficult 6 weeks my Platelets dropped into higher end of normal range.
I did post this conquest when I had completed my first prescription of 90 days.
Yes I still fear developing MYLOID LEUKAEMIA but I'm hopeful and try very hard to stay positive on that score....
Hip may be something and nothing
nevertheless it's happening and I must deal with it.
As you can see there are ladies out there that experience Joint Pain.
Time will tell the tale in my case for sure.
Now Somerset, yes I can understand your friend returning regularly it is very diverse in its beauty between the Coast and Countryside. It stretches down to Dorset, & beyond is Devon and Cornwall, Lands End of the British Isles, all beautiful counties in their own right and all hug the Coast.
I have lived here for many years in a sea side town
Weston super Mare..
However I was born and bred in South Wales and very proud to be Welsh. My children are all English born & bred ( sadly) no offence intended. Our family home is always interesting during the Rugby.
Which we have the Six Nations coming along in New Year.
I'm rather outnumbered by husband and adult children & grandchildren all being English 😀
However us ladies stick together and my 2 daughters support Wales with me. The 2 sons support dad & England, alls fair in love & sport...
Now having discovered you are Canadian, we very much like Canada.
Been twice on long lay overs in Toronto to break up the journey to Costa Rica. 2 days on each lay over.
We intend to return, I want to see Niagra Falls and husband has always wanted to do the Rocky Mountain train from Bamff etc ..
We should have done Niagra whilst on Return Lay Over. However we left wonderful sunshine in Costa Rica, and landed at Pearson International in Snow like I've never seen before. We holed up in Hampton Inn for 2 nights I tried hard to take the tour to Niagra which was 2 hours away? , Desk Clerk put his two penneth in and agreed with hubby i.e. Falls will be Frozen it was late February, and what ifs. ?? That's Chaps sticking together. Hence we are returning but in Springtime.
The other destination is Australia and that also needs Exploration by us.
You and I are similar ages and these things need to be done for sure.
We did USA many times with the family all prior to my ET/MF.
Thus I know Travel Insurance will be huge but it needs to be done ASAP.
I simply need to be stable on Meds and get on with it. I can do this, We Can Do it!!!!
Enjoy your Wine etc and Enjoy Life As Much As Possible😊
We all know we have have this illness and we need to take Control of It. Not the Reverse!!
We are Lucky we have excellent Health Care in our Countries regardless of its woes, hiccups we are the fortunate ones by birth.
Look around the world at the troubles, war, poverty human life is worth very little in many places.
Children living on the streets in dire poverty and goodness knows what else.
We have had life far beyond their life expectancy and we still have life to be lived ahead of us.
That is priceless and should be used, lived enjoyed in whatever makes us feel happy content with our lot.
We can all do this, and the added bonus of this wonderful forum which gives support as and when needed, we are fortunate.
We are all in the same boat on the same journey regardless if we wanted a Cruise or Not. We have to make the best of it and embrace every day.
I have had 2 very wise things said to me earlier in my journey in Private Messages .......
1 " Don't waste time worrying about the day you will not see, get on and live every day".......
2 " One thing is for sure, none of us will get out of this Alive".......
How true are those statements by 2 very special people.
I have never wanted to live forever, longer Yes as long as its worth living.
And that I can have a degree of control of.
Take the Medication question what I'm not comfortable with....
Eat sensibly, exercise & generally promote good health as much as possible..
And just maybe my cruise on this ocean of life maybe not be so bad after all.
If not me with this MF it would be someone else. Little ones that should have their lives before them, sadly cut short by various illness. Here in U.K. our Specalist Hospitals for Sick Children is a Real Reality Check and puts our problems into Perspective.
With that I wish you well and the Very Best in your Journey.
Thank you for the swift reply to my reply to you. Much appreciated and apologies that I didn't get your humour immediately.
No apologies needed at all! Sometimes humour just doesn't 'translate' online. I must say you seem to really have a lovely, altruistic attitude about health; I admire that. I know it's hard to be 'up' and especially when we just get our heads around one diagnosis and then it turns into something else. But I don't think the 'best by' date is three to five years at all - I've seen people on here with MF for much longer than that, and anything I've read puts it way longer - in fact, it appears to be able to just motor along indefinitely in loads of cases. My husband and I spent quite a long time in England four years ago - Oxford, Cotswolds, and a bit into Wales (Wye Valley, Chepstow, and a few other spots - just stunning). My mum's dad was from Wales (Swansea) so I've always had a soft spot for that country. And if you do get a chance for Niagara Falls, I'd say take it! It's SO impressive (even frozen it's impressive, but you'd like it a lot better when it's not minus a million degrees there!). I expect to read lots of your posts on here years from now . . . and that's no joke! (ha ha)
Thank you for the nice reply, yes I now know it's more than 3/5 years provided it's controlled and doesn't progress to ML.
How nice to hear of your time in UK.
As it so happens my husbands mother came from The Wye Valley, Hewelsfield.
Short time ago hubby had flying lesson and flew over the Wye Valley during the beautiful weather. He said it was simply Glorious to see & Tintern Abbey Beautiful.
I spent holidays in Swansea & I have family in Llangland Bay.
Oxfordshire is a beautiful County especially Oxford town and University...Cotswolds are super nice too.
You're Roots are in my beloved Wales.
Yes I fully intend to see Niagara and more 2019 in the Autumn there...
I'm sure it is beautiful even Frozen..
I will admit that when we did eventually check into Pearson International I was somewhat alarmed by the amount of snow falling and 30 below freezing.
As the storm worsened we were convinced we would not be flying that night! Along with many others waiting to board for Heathrow.
We flew after a huge De-icer did his work, the Robotic arms were impressive.
I found the Airport a veritable shopping experience, husband accused me of being missing for 2 hours, I was to be truthful. 😀
I have some joint pain from time to time with no real pattern. I can go for many months with no problem and then I’ll have a bit of a ‘flare’ for no apparent reason. It’s been quite bad this last couple of weeks (knees, hips back and shoulders) and in my case, really irritated by housework/gardening etc, which unfortunately has to be done - along with my 92 year old Mums cleaning/ gardening.
This evening I had real difficulty getting out of the chair with severe pain in the back right pelvic region (this is new pain) and sore hips! I’ve been extremely active today, so this is the result!
I don’t know if it is related to age (63) arthritis, ET, hydroxy or a bit of everything thrown in. I’ve resorted to taking ibuprofen this evening (even though we’re advised not to), it works well for me. I took my aspirin early morning, so hope there’s no interaction with a gap of ten hours?
I hope you enjoy the Newcastle forum. Harrogate is lovely, especially ‘Betty’s Tearoom.’
Thank you for the kind reply and helpfulness. Much of what you have described applies to me. The hip element is new, but everything starts somewhere.
I agree housework, gardening can be a full on job. And you care for your mum, which is good to hear. Too many of our seniors are being put into care homes.
We can learn a lot from different cultures that respect and care for their elders.
Not easy for you as you have your own battles but, Admirable!!
We are very similar in age and I too find Ibuprofen helps. As a retired nurse I do know better but it's the one analgesic that helps the aches and pains...
Maybe wise to run it past your Haematologist regarding taking Asprin and Ibuprofen. I understand the need truly, but I take Clopidagrel which does the same job as Asprin, but is much gentler on the stomach. Asprin can be rather harsh on stomach lining. I appreciate the time between the medication, it may be good to ask.
Yes Betty's Tea Rooms are lovely, I used to visit daily whilst we lived there back in the 70's. My first born spent at least 3/4 visits a week in his pram. As you must know the Hill and the Stray Area is quite a climb pushing a pram, especially through snow in winter.. Plus it was a meeting point for young mums.
Not so exspensive in those days.
I will be returning more regularly as our granddaughter is studying at York University 1st year, and has discovered the delights of Betty's Tea Rooms.
Yes me,I am on three one day,two the next,then three and onwards.Must say some days I ache every where and feel like flu symptoms do. I am not sure hip pains are related to P V and Hydrea,or just years of breeding and competing with horses,and still caring for my last old ones.I do keep going most days,but like today ., I have given in and resting...well trying to. I am 78 ,I suppose a few aches and pains go with age.!!!Best to you Sally
Thanks for your reply. It makes me feel a whole lot better that other people take large doses of hydroxy.
I had a blood test the other day and my platelets have come down to 450. I have been given the ok to fly back to Australia but have to keep on with the high dose until I get back.
Would be interested to know what level your platelets are and if you do any long haul flying?
Not sure how I feel about Newcastle itself but the coastline just north of it is beyond beautiful. (The eldest is studying in Newcastle.) Hoping to get up to Alnwick and Bamburgh over half term (and drop a boot load of ‘stuff’ off en route!!). If you can, do head North especially if weather good.
As for bone pain, I just seem sore all over especially joints. Comes and goes but didn’t seem to have it before Hydroxy. Though not sure there is a link. Two hours of ironing AND the windows is enough to finish anyone off! Maybe less sparkle on the windows and more in your step? 😂😁
Thanks for the reply, I'm sorry to hear you are sore all over, must be difficult I'm sure.
You just made me laugh, yes I did 2 hours Ironing due to a build up of hubbys shirts. The garden and lovely weather we had, got more attention than the Ironing.
But I'm learning to do things when the going is good. After retreating to my bed after the Ironing, I felt ok the next day and was up for the windows.
I laughed as, had I done the 2 jobs same day, would have laid me out for sure as it is was too much 😂
I will confess to aching in various joints today. I looked at the windows as good exercise. I may take husbands advice and get window cleaner.
Newcastle will be good in respect the Forum & the potential to shop maybe, and the Cathedral etc etc.
I went to Bamborough many years ago and agree the area is beautiful.
At that time we ventured there from Harrogate. This time I'm traveling from Weston super Mare.
Fair journey but we intend to see Alnwick and Bamborough.
Understand the need to drop huge amounts of supplies to offspring at University. Been there done that 4 times over.
Now we have a granddaughter starting at York University and yes the journey goes on as grandparents. Today is so much harder than in my children's day.
Granddaughter has Zero Grant etc her accommodation is huge amount of cash for small en suite room. So yes we will be heading to York few times a year to boost assets and see her. Her brother is not far behind her, our son has no chance of early retirement that's for sure.
It's what we do as parents, and grandparents are increasingly helping out these days.
I agree it's difficult to say it's down to medication but there is an element of Joint and Bone issues.
I really don't need a hip replacement in the mix for sure.
But what will be will be, no changing that!
I wish you well with your situation and your eldest at University...
Hi mary,been on hydrea around 11yrs,bone pain only really became a problem last 2yrs or so along with fatigue,pain mainly in long bones but do also suffer joint too,can't be bothered mentioning to haemo,will probably dismiss it as anything to do with condition or medication! Keep taking the tablets! Painkillers i mean! Sending hugs🤗tina x. P.S. Tell hubby to clean windows!
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