Hi everyone,
I have ET, CALR until 6 weeks ago I was taking hydroxy. The fatigue and bone pain was horrendous . My heam has changed me to anagrelide, saying hopefully I will tolerate it better than hydroxy, but unfortunately 6 weeks on, I feel worse than ever 😐. I’ve not been able to work for that last couple of months due to the fatigue and feeling very low in my mood.
Has anyone else had the same experience?
Hi. I have had to give up work. Fatigue and ET symptoms exacerbated by stress, but mine is not just ET also stroke fatigue. Hoping a good rest will help! Take care. Jacquie x
I can understand what your saying, there are times when daily life is difficult to get through. my pv jak positive has been unremarkable for the last year but just lately my spleens' is increasing along with night sweats and headaches. luckly my haemo dept have signed a form from the job centre remarking that pv is a type of cancer and can be delipidating . this is a work capability assessment which hopefully will put me in the support group so I don't have to look for work every day. so please don't give in to this disease.
Hello. I also have CALR ET...for 15 years. No meds for the ET. But I was finding myself in a lot of body pain, especially in the past year. It felt like I had the flu all the time..my bones, muscles, and joints hurt. Anyway I saw my doctor to get a note so I could get a reduction in work hours. I only wanted to work 30 hours a week. She said it's not the time to give up, you are only 42 and have many more years to live and so she put me on Cymbalta. Cymbalta is just an antidepressant that helps with pain. When she recommended the Cymbalta I had to hold back an eye roll because I thought there was no way in hell a antidepressant was going to help with the pain I was feeling on a daily basis. But I'll be damned...12 hours after taking the first pill I felt a major change and I'm almost completely pain-free now. I am still working reduced hours (30 hours) just to help with fatigue but the pain is gone which was the big deal for me. I say it's worth a try.
Thank you for your reply, wow that’s fantastic, glad you have found something that helps you with your pain.
My GP has put me on fluxatine which is also an antidepressant. It has definitely helped me with my mood, but not my pain unfortunately. I shall ask my GP about cymbalta. Thanks again, Sue x
Yes it’s always worth asking to try something else. We are all different. What worked for me was Pegasys. Although I am struggling with fatigue now, we think due to post viral shingles. Before I started Pegasys I couldn’t lift my head off the pillow (most days). I was back to work full time within a month of starting Pegasys. This was 3 years ago.
Hi I can honestly say I feel worse than I ever have at the present than the 4 years I have had ET CALR. Platelets 700. Is having Shingles. I have had no symptoms with ET but the pain with shingles especially at night! Is horrible. I havent had hardly anytime with ET but this shingles I have had 4 days off so far!!! In three weeks. Who knows how long this will go on for. Hope it is not upsetting my ET??
I started Pegasys a few months ago and my platelet count is nearly within normal range. I'm lucky in that I'm self employed and work from home so still working. Pegasys is worth a try if you can get it! Good luck.
Hello there, sorry to hear you are struggling. I have ET jak2 for nineteen years. Over the years it has been treated with Hydroxycarbamide, anagrelide and interferon, I have struggled with fatigue and reduced my working week from 5 days to 3 days then 2 and now 1 day. This has had financial implications but I believe I have a better quality of life since reducing my working days. It really helps how others cope and manage their situations. Take care
I am Calr too and had to change to anagralide. It is better than HU side affect wise for me. But yes I still have fatigue and bone pain. I know also have arthritis. So I have not worked for about a year. I know I deffo could not cope full time. Maybe eventually will get back to.someting but at moment my health is my priority
Hi there, I have ET calr and have even had a hysterectomy like you, but ten years ago and was very ill. Also take flouxtine. I had a really lovely little part time job,but had to give it up! That was about four years ago and although I have very good days, there is always payback! Which always takes longer than the one good day!! One nice good day yesterday, writing this in bed this morning, body in pain, particularly legs and head has ten whistles spinning round in it!
Don't really know what to make of the hip pain because my finger joints are swelling with arthritis so maybe it's that. Can't be bothered to tell doctor or haemotoligist because they always say nothing to do with anything! So what's the point! I take hydroxycarbonide and clopidriol but the numbers are climbing still.
You know how you feel, they don't. The quality of your life is in your hands. As a good friend on this site put it, " every part of the body depends on blood and our blood isn't right so it's logical every part of the body could be affected at some point.
Yours EVER tierd Carole 😥😉
Hi Bridie.
So sorry to hear you are suffering as well. I’m like you some days (not very often at the mo) I’m up and doing jobs around the house and then it’s like someone flicks a switch and I’m drained!
I’m off work at the minute, I work at my local hospital in outpatients, and I love it. I reduced my hours last year hoping it would help but unfortunately it hasn’t. I’m only 45 and I don’t want to have to give up my job, but I just can’t shake this fatigue 😐
I totally understand your problem I also have ET CalR. I was diagnosed in 2008 and have been on hydroxy the whole time. The fatigue is a killer especially when I was working. I was a clinical lead nurse on a busy ward, believe me it was a nightmare with ‘brain fog’ I ended up with depression and was off sick for ages. I was transferred to a less stressful department but still a clinical lead. I tried reducing my hours, which helped with the fatigue but the fog was still there. My memory and concentration was so bad I thought I had dementia. Eventually after long periods of time off work and some counselling I stopped fighting my ET it was too exhausting so instead I embraced it. I finally recognised that I couldn’t function at the level I had before and decided to throw in the towel and take early retirement. That was in 2014 aged 58 and 6 years after my diagnosis. Retirement was the best thing I ever did. I feel so much better now. I still have bone pain but that’s managed with Zapain. As for the fatigue I can now pace myself so it’s no longer an issue. I was so lucky to be able to take early retirement and have a living income. I know others will not be as fortunate. I can only hope that your situation will become more manageable for you. I wish you all the very best. Val
I decided to give up work..luckily I was able to. I did go back working part time but my quality of life wasn't good. Tired.. juggling the tiredness of the medication. So 10 weeks ago decided enough . Feel better in myself I have to admit. Now getting or trying to get platelets down. Very much a rollercoaster but the bone pain can get painful at times..
Good for you x I’m glad you feel better in yourself. It’s a constant battle isn’t it ?
Sue x
I’ve had ET Jak2 for 11 years now and diagnosed with PV, as well, 3 years ago. My hemo had me on HU the whole time until about 2 months ago. He took me off because my platelets finally went down to the normal range (about 393,000), but I also developed anemia which was causing extreme fatigue. I tried anagrelide many years ago but I couldn’t handle the side effects. . I’m self-employed so when I need to rest, I take a break. Some days are better than others. I agree with some of the others. If you are experiencing pain, you need to find something that will help and hopefully improve your quality of life. All the best, Cindy
Hi, I was diagnosed in July 2007 with PV, and continued working up to march 2008, when i could no longer cope. I was taking interferon injections. Fatigue, bone pain, brain fog, you name it, It took a long time for me to accept my new life. I did apply for DLA and was turned down but was successful on appeal. This was a great help as i still had a mortgage. I wish you all the best.
Hi - I gave up working for an Employer and became self-employed. I can now manage my own work load and the hours I work... without being hauled in front of HR and Occupational Health.
I have PV and also had a stroke in 2012, which left me with a weak right leg and essential tremor.
I had a rough week last week, so did minimal work, today I'm feeling 'better' so I'm going to be catching up. For me the hardest part of being self-employed is trying not to take on new clients when my health is OK... I have to keep in mind that things could change the following day and keep my work load down to a manageable level. Thankfully I get PIP, which helps financially, so that takes the pressure off.
All the best, I hope you can find some way to relieve your issues in the not to distant future. Kari.
Hi, Slowed down significantly over a long period of time.Cheers Uzza
Hi M,
My working life started when I was twelve, fats forward full time working until 2009 My first problem was a stroke caused by my condition.
The NICE guidelines I am sure you know have ET as a cancer though for some not "solid"with a good medical team and specialist knowledge you can more easily navigate the work life balance.I cannot stress enough about early support and the ability to make INFORMED choices I had a long fight when I felt most vulnerable.
Good luck Lav007
Oh hi M I have also been in the menopause for many years that is my worst prob.Forgot to mention in my previus .At night i only use a sheet wan a micrfibre towel which absorbs my sweats, chillow of minimal use.Lav007
Hello, sorry you are having these symptoms. I was having the same, bone pain is quite bad, and was going to retire early. This disease is so odd, you can look healthy but have horrendous fatigue and pain. Pegasys has normalized my counts in a few months. I am feeling amazing!
Not sure if interferon is an option but might be worth exploring. I also see an MPN specialist, which is so important if you can.
Take good care!
Hi Indigo
My Haematologist is the best and very Knowledgeable.Dr Drummond Glasgow Beatson .All the best Lav007
Is Anyone using Reblozyl (luspatercept) for anemia due to MPN/ Hydroxyurea?
I have MF and wondered if anyone has had the opportunity to help with research into this illness.
Anyone else wonder if stress has contributed to their MPN?
Has anyone had a Covid vaccine antibody test?
Has anyone discontinued Hydroxyurea? Why?
