Steroids and lesions

First of all I know nothing about Fatty Romanus Lesions.   Though I'm about to look that one up and hope that reading about it doesn't give me back ache!  ;)

I have been on prednisolone previously.   I was on that for over 2 years post bone marrow transplant.     I've got a horse on it now ....I've to count out 100 tiny tablets a day for him!  but you may not want to know about that distraction.

Having been through a transplant and having the benefit of hindsight  - albeit some time ago - I would personally only ever go through that IF ALL other possibilities were exhausted and prognosis was poor.   It's important to appreciate that transplants in themselves carry huge risk and consequences and I personally don't see them as "rebooting the system".   Rather they kick everything from here to kingdom come and with a bit of luck you won't have too many long-standing life-affecting consequences.      

On the positive side it does seem like they're getting to be able to explain the root cause of your pain problems.  Let's hope that you and your team can find a solution right for you. 

edited with a p.s.    Looked them up via Google Scholar and in a veterinary manual (I know! ;)  )   Seems they're not an uncommon cause of back pain and though I'd not heard of them I had heard of ankylosing spondylitis

Hi Darley,

Thanks for your response.

Believe it or not, I have seen a Rheumatologist who declared to be confused by it's presence - where does that leave me?

My Heamotolgy consultant was also confused but believes it to be a fatty version - again he was confused... What I maybe should of said - and this is the key thing - both consultants are of the opinion this is NOT the cause of the pain. This is in the thoracic spine and not in multiples in the lower spine which is consistent with ankylosing spondylitis. Therefore they are ruling ankylosing spondylitis out. Interesting my reading about Fatty Romanus Lesions links to bone marrow tissue.

I think the important thing is this from a diagnostic point of view I was complaining of mid back pain 8 months into diagnosis and on Imatinib. Despite having 2 spinal MRI's in the time of having the pain, and them being clear of this lesion, now it is appearing it would seem the pain is apparant before the change. This was the same with findings on my knees too.

Regarding transplant, I appreciate your experience and please don't think I am belittling it or dismissing it as a breeze, I am not wanting to do that. I am merely at the stage where if I don't react to what is going on, I run the risk of having a very limited quality of life judging by where I am NOW and the limited options I am being offered. Currently I have went from being operational as a firefighter 3 years ago, to working in the office, that has went from full time to only being in 2 half days, and since January I haven't been able to even do to that. At the moment I am pretty much linited to sat to a chair in the house, if i move i am like i am made of stone or a muscle pops. I cant bend, lift, twist. My wife has to help me get dressed... I am embarrassed to say.

Regading transplant options I have a matched donor sibling and I am hearing of reduced intensity options. As opposed to aggressive radio and chemo. Regarding the immune system reboot, I get your point. I have spoken to a few different professionals about the bodies immune system and it being ablitered before trying to regulate again. There is also numerous papers regarding transplantation for Rheumatological and other conditions... Albeit autologous as opposed to allogeneic. Indeed my transplant team have admitted to seeing one other person like me turn a corner for the better following transplantation.

Honest, I do not want you to believe I am taking this decision lightly. I just feel like when your car is making a noise, driving different, you know something is wrong, but when you take it to a few different garages and they say they can't see anything obvious, just let it develop... then bang. Well I feel I am at the let it develop stage.

Sorry to hear about your horse, maybe we can take some parts and share them with each other, we could make a new star sign, half man, half horse!

Thanks again for your slant and experience. Did the prednisolone make a difference?... Suspect it did if you were taking it for 2 year.

Thanks Chrissie for your thoughts as always. Hope you are keeping well.

Kind regards,
John

Hi Darley

I honestly don't know what to do regarding everything, bit more research and take it from there. Just found out today in letter that I have vitamen D deficiency and the Rhuematologist has asked my GP to prescribe supplementation.

I have had the 3 options put to me

1) The transplant route.

2) 3 week trial of steroids. Although it was said that there was confusion on what the team would do next, if an improvement, it would be detrimental to continue anyway apparently.

3) Go to full dose Bosutinb and ride it out. It was mentioned that I may of not been getting enough TKI into me, and the TKI withdrawal phenomenon may have been taking effect with the chopping and changing.

I'll have a think and take it from there.

Good luck with the horse.

John

John-Paul,

Re your vitamin D3 deficiency... well you can do something about that quite quickly-

a. sit in the sun as much a possible - Darley suggests a holiday but if you can't manage that.....

b. buy some natural Vit D3 supplements and take at least 5000 IU/daily.... your doctor can monitor your levels: see link here for D3 levels for normal health.  

https://www.vitamindcouncil.org/blog/why-does-the-vitamin-d-council-reco...

Regarding you GP prescribing a supplement then you may need to educate him/her on the latest research into required levels for normal health. Most GPs don't keep up with vitamin and mineral research. Yours may do but just in case you should do some research on that.

Re: your options as you see them now.

1) The transplant route.

I agree with Darley that you should try everything else before you take that route- but I totally understand why you are considering it. You know my view on where you should have an SCT, so I won't repeat that here.

2) 3 week trial of steroids. Although it was said that there was confusion on what the team would do next, if an improvement, it would be detrimental to continue anyway apparently.

Steroids.... this would be a good way to find out if your adrenal glands are exhausted. If you improve then you know you should take steps to support your adrenal... see link here: 

https://adrenalfatigue.org/what-is-adrenal-fatigue/

3) Go to full dose Bosutinb and ride it out. It was mentioned that I may of not been getting enough TKI into me, and the TKI withdrawal phenomenon may have been taking effect with the chopping and changing.

TKI levels: your clinical team could easily check your plasma trough levels to see if you are metabolising enough of the drug or too much (too much would explain elevated side effects).

Some time ago the EUTOS study of plasma trough levels with imatinib found that plasma levels at or over 1000 ng/ml are associated with a higher likelihood of cytogenetic responses and molecular response: http://www.eutos.org/content/path_to_cure/information/blood_level_testin...

I hope you can find some answers, at least you know your Vit D3 levels are low. I would advise you to at least try the steroid trial. If you adrenal glands are underperforming it would do no harm to keep you on hydrocortisone for some time without adverse effects. I think most of us may suffer from the effect of stress on our adrenals...given we have all experienced the stress of a diagnosis of CML!

Sandy