Back pain

[106776]

Hi, I am currently waiting on blood test results to see if I have ET. I'm 42 and have had consistently raised platelets since 2017 raining from 450 to 600. I also have recently been diagnosed with a form of lupus which effects the skin. Since before Xmas I have been suffering from back pain which goes from the middle of my back and shoulder blades in a band round my ribs to the front of chest. I have been on naproxen which hasn't helped and gp suggested physio which also hasn't helped. I'm normally a really active person but this is holding me back and getting me down. Just wondering if anyone has experienced this as a symptom of ET or raised platelets? Many thanks.

[lhasedoglover]

HiSorry to hear you have backpain. Inheve a question. Are you also short of breath?

Do you use bloodtinners?

Grt

Christel Belgium

[106776 in reply to lhasedoglover]

Hi thanks for replying. I don't have shortness of breathe but I do feel like there is a tight band around my chest. I've been on aspirin for a couple of months now. I had a scan to rule out blood clots before Xmas and it was all clear.

[lhasedoglover in reply to 106776]

HiWell I was a bit afraid. it could be blood clots, but I didn't want to scare you. But you had a scan. For me thé backpain and shoulder pain ended in Massive longembolism. Lots of blood clots.... Hope they Will find thé cause.

Grt

[106776 in reply to lhasedoglover]

Oh dear, that sounds horrible, I hope you are well now. Thanks for taking the time to reply.

[lhasedoglover in reply to 106776]

TxsIt al happend in 2014. Six weeks hospital. Thee in intensive Care. I am glad you had your scan...

Then my Et has been diagnosed.

Bye

[catkinspolymer]

Hi 106776, n thats exactly the same symptoms i had back in 1996 and my gp thought it was heart trouble. I was almost like a heavy stitch and went away with some exercise. Once the ET was treated and the platetets fell it went away. To srart with I was on 18tablete of Hydroxy a week but no venesections. Anyway I am still here age 76 and can keep moderately active.

[catkinspolymer]

Thought you might find this useful , Town Crier

old age and ET

catkinspolymer

catkinspolymer•

4 years ago•3 Replies

From: CHRIS ATKINS <[e-mail]>

To: [e-mail]

Subject: Essential Thrombocythemia and the RUBBER INDUSTRY

Sent: Tuesday, 19 August 2008

I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.

I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.

Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance.

It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?

Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.

all the best hope the spelling is up to the mark.

all the best

Chris Atkins

Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.

[Wyebird]

Raised platelets could indicate inflammation somewhere in the body.Maybe your back pain in the cause of high platelets.

I suffer with back pain periodically I have to pay for physio. It’s a horrendous pain. Good luck.

[nightshadow]

Not specifically the area you describe, but I have noticed that when my platelets and red blood cells are down I have less pain in old injuries. Perhaps ET is emphasizing a pain that is caused by something else.

[cmc_ufl]

I am also awaiting my genetic test results for ET diagnosis. I’m 30. Bloodwork indicates I’ve had high platelets for at least 10 years, just never picked up by a GP since mine have been marginally elevated (440-460). I remain completely asymptomatic.

You are not alone in this. I’m nearly 4 weeks into the diagnosis process and have mentally prepared myself for the ET diagnosis that both my hematologist and MPN specialist have told me is most likely coming. ET is manageable, but disease progression is my fear being diagnosed so young.

I have found much comfort from the people in this forum. There are people here who have had various MPNs for many, many years. The information I’ve learned here has been much more useful than what I’ve found anywhere else.

Feel free to keep us updated with your situation. Wishing you the best.