How severe is your bone pain in E T & is this made worse or better with treatment ?

[Rinty]

Hi All, I am 40 years old lady, working reduced hours (7 hour day)! now but use to be full time, I was diagnosed with ET 5 years ago with counts ranging from 900 to 1800, currently around 1300, fatigue & tiredness debilitating a lot of the time, but like most push myself to carry on as near normal, have 2 teenage children to contend with, which to us exhausting. I started hydroxycarbamide in November but only lasted about 6 weeks as had bad reaction & also the flu! Then tried Pegysy's interferon, did not agree with me either, am currently deciding on next treatment, but my question is........ Since starting & stopping therapies I have experienced almost total body pain in my bones!! I feel like I have been kicked by a horse, for one of a better term. When on treatment my doc recommended codeine 30/500 without any relief, I then progressed to slow release morphine capsules zomorph 20mg then 30mg then 40mg etc until finally being on 100 mg twice a day + oramorph every hour through the night as required! Extreme I know, but now I am not on therapies for this short period I am still in a considerable amount of bone pain, my feet, legs, lower back particularly bad, arms, fingers, head etc. I am trying my best to reduce the morphine as I am uncomfortable talking it, but the pain is still so severe. My Heam has said that this 'practically unheard of' in ET, I am very interested to know if any of my fellow sufferers out there have/ are experiencing the same? My Heam is wonderful and not disbelieving , is it just that no one else had shared this experience or am I simply EXTREMELY UNUSUAL ? Thanks guys and good luck to you all, it's tough, but that ever popular motto, there is ALWAYS someone worse off, makes me think xx

[Rinty]

Oops meant to say, I am a 40 year old lady ! Ps I have also requested another BM to track my disease, am wondering if anyone has progressed from ET TO MF for example & did their symptoms change/worsen ? Xx

[Ephelia]

My husband has ET, takes 1500 HYdroxycarbamide and 150 aspirin daily. He regularly says his bones ache and he feels like he's been 'kicked by a horse'. He takes over the counter painkillers (ibuprofen and paracetamol at the same time) but the best advice he was given by his consultant was to take regular excercise. He says this definitely helps, although doesn't get rid of it. Sending you sympathy.

[Rinty in reply to Ephelia]

Thanks so much for your kind response, I suppose it really helps to know I am not alone in this, we 'all' generally look so well!! But hurt so very much, I wonder if you have seen this new booklet available?, it is the best I have found to date.

leukaemiacare.org.uk/assets...

Good luck and Best Wishes xx

[JediReject in reply to Ephelia]

Hi Rinty, Ephella and all. . I have Primary MF and do get some bone pain with it which varies. Lower back, legs some of my finger joints can be painful some days. Interestingly my GP wouldnt prescribe Bruprofens because I think they are anti-inflammatory and he said they shouldnt be taken with HU, so I dont know if thats the case you can only go by medical advice given. So it would be worth checking with your Hem before you buy over the counter maybe. Hope your pains ease up as it sounds like life is pretty full on for you. Im glad our kids are now in their 20s but they can still be hard work lol. Cheers

[Rinty in reply to JediReject]

Hi JediReject,

So sorry I didn’t reply sooner (5 years I know)! I have been following your story but had no idea you had sent me a reply. Hope you are doing well, best Wishes Anita.

[JediReject in reply to Rinty]

Hi Anita you made me laugh there. Much has happened since then as you know. I'm going along ok and attending Manchester Royal for regular treatment. Best wishes to you also. . .

[Rinty in reply to JediReject]

Ha ha, glad I made you laugh, best Wishes to you to.

[rubyrubyruby]

Hi. Sorry to hear you are having such a rough time.

I am 38 and currently on just aspirin.

I don't experience all over bone pain but do get alot of pain in my legs.I do get mild pain elsewhere as well but that tends to come and go. However I have 2 dogs so walk around 2-3miles a day so whether that helps or not I am not sure.

[Rinty]

Hi there, many thanks for your kind reply, may I ask what your counts are? (not that I suppose it makes much difference) as I have read many a time, that regardeless of the counts (if have been normalised or not) the symptoms tend to stay, or am I wrong?.... I too have a beautiful little Puppy (well he is 2 now) but yes I walk him daily and suppose it does help, but when returning I am litterally exhausted. I gave in this morning and took two paracetamol, not that I expect it to help very much as the meds I have been taking have been a lot stronger, but I am very keen to reduce these. Best Wishes xx

[rubyrubyruby in reply to Rinty]

Hi.

I have ET and my platelets are 845 at the moment, although my RBC count is high at the moment too so maybe have PV as well!

I find the fatigue is harder to cope with than the bone pain. I do have to pace myself though and if I am on my feet for any length of time I do struggle. I find a couple of hours shopping and then walking dogs for an hour is all I can manage!

[Jo_L]

My counts are up and down like a yo-yo, having gone from 674 up to 2255 and then down to 134 in the space of 5 weeks. They were up to 603 last week and I should soon get the results of this morning's blood test.

I don't think I've experienced any bone pain irrespective of the level that my platelets have been at, so perhaps I am lucky in this respect?

Jo

[Rinty]

Wow, you surley are, thanks for the reply xx

[light]

I experience this pain all over my body, bones, joints all the time. Some days it gets very bad and some days not so, but pain is there all the time. Before I was diagnosed with ET 2011 I did not have much of the pain but other symptoms, which are; night/day sudden sweats, headaches, dizzy spells, vision distortion. These symptoms are still present and last 4-5 months I have been experiencing memory loss, forgetfulness, confused, 'foggy brains' being kind of lost, etc.. Six months after I was put on HU I experienced extremely bad pain all over my body, joints, legs, lower back, feet in my bones, fatigued, and feeling shattered. Especially affected my right hip, knee, lower back to the point that I was not able to walk at all. I am still struggling with that pain and now I have to use crutch in order to walk and be safe.

God bless

[Rinty]

Thank you so much Light for your kind response, I completely understand, 'ALL OF THE ABOVE' I have experienced and still do on a daily basis, I have to say the sweats are particularly bad at the moment and so too the pain. I have never had a problem with my memory, but of late it has been problamatic. Are you taking any opiates (ie codine, morphine etc) for the pain, and if so how much? and does it help? I have caved in today and after taking two paracetamol to no help I have taken 100mg slow release morphine, the pain is still there but the edge has gone!! I too have terrible headaches and also find walking, especially first thing in the morning and after sitting incredibly difficult and painfull, but I have to say the more I move this helps. God Bless to you also, I totally totally sympathise. Best Wishes xx

[Johnj]

Hi Rinty, I note from your e-mail that you have been on many of the treatments used for controlling platelets, however, one that you haven't mentioned is Anagrelide. Anagrelide was a drug that was designed specifically for control of platelets ( as I am led to believe) it has the advantage that it does not affect the WBC and Neutraphils to the same extent as the hydroxycarbamide. It might be worth discussing it with your Haematologist.. I have experience of both drugs and I am presently on a combination of both drugs. My platelet count varies 350 to 500 and is pretty well controlled. Initially when I was diagnosed I suffered from heavy sweats and headaches, but thankfully did not have the severe bone pain that you experience. I no longer experience the heavy sweating and seldom have headaches. I was diagnosed 13 years ago and am now 75 years of age. When I was diagnosed my platelet count was 17000. I am presently on 1gm/1.5gm alternate days and 0,5mg of Anagrelide daily. I no longer take aspirin.

I wish you well for the future.

johnj.

[Rinty]

Hi John, yes Anagrelide is my next option, but I am very wary of this due to the link of transfer from ET to MF, however I am currently mulling this over and have til Tuesday to make my decision. Best Wishes xx

[Hidden]

Hello Rinty and everyone

I have had ET for 4 years now and am on 75mg Asprin and 11 Hydroxycarbamide tablets a week. My bloods have been stable for about a year on these meds. I have always had bone ache and mega fatigue. This all got progressively worse at the beginning of this year. I always felt exhausted and everything was an effort. To make things even worse my bone pain, all my joints, even toes, and long bones hurt, especially at night when I would spend most of the night in agony not able to sleep. A very good friend of mine is a professional nutrionist and I was talking with her about the awful bone pain ( which over the counter medicines didn't touch). She suggested I went on an Illimination Diet. This is meant to enable your body just to have to deal with the toxins from the hydroxycarbamide without having to deal with any toxins due to food and drink. So for 4 weeks I gave up Wheat, Diary, Caffeine and Alcohol!!!!! It was really hard to begin with and caused a few added headaches, but I would do anything to get rid of the pain. I also kept a diary of pain and fatigue. Well after 2 weeks I found that my terrible bone pain had turned into bone ache. I slept a whole night and it was wonderful. I continued and the bone ache became occasional bone ache. After 4 weeks I was to introduce back into my system 1 of the 4 things. I choose diary... well actually I didn't choose it I sort of cheated 2 days before I should have and had the smallest slither of 'blue veined cheese' that you could imagine!!! About 1 hour later I was in agony. To cut a long story short this happened to a slightly lesser extent when I introduced wheat back in. Obviously this isn't going to work for everyone and we are all different!!! But what I have found is that with all the medication toxins we have to take... if I overload with food toxins then I am more fatigued and in more pain. Because of not being in pain, I can do more walking which has helped with the fatigue as well. And of course the sun is shining more now!!!! Anyway I hope this helps a little, it has certainly helped me.

Enjoy the sunshine xxxx

[Rinty]

Thank you Suska, perhaps I will be strong enough also to try this? Best Wishes Rinty.

[Borage]

Hello Rinty,

I was referred to a rheumatologist for joint pain and stiffness. He said it was not arthritis but referred me to a Haematologist for raised platelets which led to the diagnosis of ET. I have been on Hydroxycarbamide 1g daily and aspirin for over 4 years. My platelet count stays stable under 400.

The pain continues, it wakes me in the night and greets me in the morning. I start the day by stretching and flexing my joints while they are still warm, some of my fingers are locked at first but I can work them free and massage the joint till it moves without "clicking." I take fish oil and glucosamine in the hope they will help. I use hot water bottles and warm baths (hot baths start the itching up again) and Lavender oil to help to relax to get some rest if not sleep at night.

I walk the dog for half an hour a day and find swimming helps me feel better. If I do too much the fatigue is much worse the next day. I try to keep active in short bursts with time for rests between tasks, a bit of gardening, then coffee, a bit of housework then lunch.

If I sit for some time the stiffness returns and getting moving again is difficult. If I try to kneel the pain in my shin bones is unbearable.

I try to keep painkillers to a minimum, they are only a temporary help, the aches and pains just return and I want my liver to last. I read, do brain puzzles, repeat prayers, sing (if I am on my own) have a hot drink, eat chocolate occasionally, even watch TV to distract my mind from pain. You do get to be less aware of pain or itching if you are not focusing on it. Try not to discuss it, try not to moan about it, refuse to be a victim to it, life goes on, make the best of it. Ask for a referral to a pain management specialist. A low dose of antidepressant may help with chronic pain.

By the way my Haematologist told me that itching is extremely rare in ET! Perhaps they should read the forum?

I hope that your pains will become more bearable, keep on being brave and trying, where you can to carry on as normal.

Best wishes,

Borage

[Rinty in reply to Borage]

Many thanks for your detailed response, at least I know I am not alone, yes I have been refferred to a pain managment clinic once again and also will be trying Amitryptiline for the pain. Best Wishes to you. Regards Rinty. xx

[Borage]

Hi Rinty, that was the medicine, I find that words and names go missing. My mother who is 87 and me with my chemo brain have some frustrating conversations.

Best wishes, Borage

[Tomaj]

Wow. I have just started treatment. So far so good. I am ok on the Hydroxycarbamide and not taking pain killers. I hope I don't have to go back on them. Fingers crossed.