My bottom spine felt like it was exploding
Posted , 7 users are following.
Hi, I was dignosed with PV 2015 told I had it for sometime like years, got the jak etc.
Last few weeks I been getting this horrid feeling at the bottom of my spine.
Drove around a roundabout and had to break behind a car and after, my bottom part spine felt like the marrow was falling out.
I keep getting this feeling at times now, it's extremely painful.
Yes will see my doctor about it, but have any of you had this experience?
0 likes, 15 replies
richard96620 Orseblue
Posted
Are you taking the hydroxyurea drug ?
Richard Law
peter98873 Orseblue
Posted
Hi Orseblue,
I was prescribed Hydroxycarbamide for many years and currently I use Ruxolitinib
which is more sociable and comfortable with better blood control. I have used the latter for almost 2 years now. Never have I experienced the spinal symptoms you are receiving and I couldn't possibly offer any explanantion either. You are right to take it up with your doctor. My wife suffers painful spinal problems and receives hospital treatment for this but your symptoms are unknown here also.
Good luck.
Peter.
Zapamania peter98873
Posted
peter98873 Zapamania
Posted
I was prescribed Hydroxycarbamide (formerly urea in UK) from the very outset following the usual tests. Over the years the dosage went up and down until in the later stages I was taking maximum dosage. At one point I was stopped from this drug and another drug was temporarily prescribed for about 1 month after which I was back on Hydroxy again at a lower dosage. This continued as before until I reached maximum dosage again when i was beset by some very painful symptoms to my feet and elsewhere. The consultant instructed I should cease Hydroxy and arranged for me to receive Ruxolitinib (Jakavi) immediately. I was already a participant in the medical trials in UK for this drug and this assisted in my receiving the new treatment. Ever since then (about 2 years ago) I have used this treatment. It has proved so much better all round. But, the PV has now progressed to MF although I have not noticed much difference. with my blood tests back to the normal levels where they have been for possibly over 9 months. From my point of view, Ruxolitinib has been a great success, so far. Tomorrow I have a hospital appointment for some follow-up checks relating to the feet problems I encountered when taking Hydroxy. I did not realise the PV had changed to MF until blood tests revealed this had occurred. Doubtless I will learn more tomorrow. Ruxolitinib is probably better with MF than with PV but it is fine with both. No cure though but a more effective long-term treatment I suspect. Still early days! Good to see you keep well Linda/
best wishes. Peter.
Zapamania peter98873
Posted
Hi Peter thank you for responding to my question. You say now the Pv has progressed to MF. Sorry to hear this. I'm on Jakafi about 4 months now. I only took HU for 4 or 5 days. It was intolerable for me. I'm thinking they might schedule a bmb for you tomorrow. I'm doing ok on the Jakafi, my platelets are dropping slowly so far from a high of 1 million to 588 last month. I'm going March 2nd for new lab tests. Good luck with your appt tomorrow. I hope your foot problem can get resolved. Linda
peter98873 Zapamania
Posted
Many thanks for your comments. I am not with Haematology tomorrow but with a vascular consultant so I doubt a bmb will be discussed. A very long story altogether, but not unconnected. Hope your readings settle nicely for you as mine have done and that your tests resolve satisfactorily. We all need some luck and encouragement at times. It helps to be a realist to stay on an even keel. Regards.
Peter.
Zapamania peter98873
Posted
Hi Peter you are spot on that it helps to be a realist with this disease. I'm having trouble with friends and family members that just don't get it. I guess cause we look "normal" they think we're fine. With other cancers the chemo & hair loss make it more real for them. I only have 1 friend who has studied it and has taken me to many apts. who gets it. We have good days and bad days and we don't have any clue what today will bring. I'm so glad we have each other. So I'm wishing you good luck with your vascular dr appt. Linda
peter98873 Zapamania
Posted
Hello Linda.
Thanks for the response. I think because PV is such a rarity it does not get the publicity that cancers receive. I do think that with the current research into myelo-proliferative diseases, particularly in your country, people are beginning to wake up to PV etc but it will take some time to be accepted generally. Even the medics are not immune to this but some seem to be more aware than others, unremarkably. If you don't see it you just don't buy it!. I have often been asked by some medics to explain what I have but the doctors know of the problem but are never confronted by it in their patients. If they do it is referred on. I still haven't come across anyone who is similarly afflicted by either PV or MF, but they of course are there on the internet. Have a good day.
Peter.
felicity09575 Orseblue
Posted
nandrews Orseblue
Posted
Interesting to see you mention this. I have had very occasional strong pain in my back, I believe it's since I was diagnosed and started taking meds.
?The pain isn't at the base of my spine, though it is not always the same place, I would say it more often is in the middle to top. The pain is so strong that I feel unable to move, but as the pain increases I feel bound to move to try and releive it.
?It usually occurs when I am sitting and have just sat down. So often I find that standing again, after 'pushing' through a little more pain, the original pain subsides. I hold this position for a few moments before trying to sit again. Sometimes it returns and so I stand once again and wait. Eventually I can sit without the pain.
?I have mentioned it to a number of doctors who have dismissed it as 'unknown' tho' one suggested it was cramp. I doubt it is that from where the pain is and it feels so strong. Fortunately it doesn't occur more than once every 3 - 4 weeks.
?I would describe the pain as like (if I imagine) having a sword or metal bar pushed down my spine from top to bottom! Extreme because of the degree of pain and the metal bar effect because it almost makes me feel immovable.
?Nigel
Orseblue nandrews
Posted
I had the extreame pain 2 times, both times driving in a roundabout. The pain goes up about one third of the spine. Still manage the car ok, pulled over asap and it took about 10 or so minutes to slowly go away.
I can now feel a very dull burning sensation all the time.
nandrews Orseblue
Posted
It might be useful if we are similar suffering symptoms and the cause is the same.
?I may ask at my next consultant appointment if there is anything that they can suggest.
?To refine my symptoms, the pain is apparently within the spine and it does surge (increase/decrease) apparently with my pulse, tho' I have never had the presence of mind at that point to check my pulse! It increases and gives the sensation that something is going to break or explode! But as I say I usually am sitting, or lying down when it starts. Although it is initially hurting more if I stand up (or sit up from lying down) the pain does ease and eventually disappear when I do. From memory I think I hold my breath too, since it seems that any movement will make it worse.
?My last appointment with the haematologist was only a couple of weeks back. So I won't be able to ask for another 2 months.
?I will try to keep in touch so I can pass on anything I learn. Perhaps you will be able to do likewise.
?Nigel
Orseblue nandrews
Posted
I just been to my hematologist last week and the same got 2 months until the next appointment.
It sounds very similar. That same increasing pain, I remeber wriggling my feet a tiny bit to make sure was not getting paralyzed.
Yes please keep in touch.
Im not on Hydroxyurea, I have venesection every 2 months and they take 0.5 litre out.
Working full time and will do for as long as possible.
harrishill1 Orseblue
Posted
Hi Orseblue. Your GP shd order Xrays or ? There could be almost anything causing the problem. I have back pain but only if I lift something heavy, or weed too long.
Right now, I am using my tens unit. It's battery operated electric pulses to help stop back pin. I did lift something way too heavy, and now am paying for it. Your problem sounds like you need an Xray etc. I wish you the best to find out what the problem is. Harrishill
Orseblue harrishill1
Posted