Another update, not so positive, but thoughts appreciated

[LupusKaren]

My original postings here:

healthunlocked.com/hughes-s...

First of all would like to say my Hematologist is one of the recommended ones on the list.

My Hematologist 8 weeks ago, bowed down to my Rhuematologist who has been continually unhappy me using LWMH, mainly because of the discovery of two fractured vertebra, we know not how old, they were spotted on a review of an old MRI spine. My Rhuematologist is concerned about bone density, and has been niggling away at this, even though a Feb 2019 DEXA scan came back as normal, aside some thinning of hip bone, but my FRAXA risk was estimated at 10 yr 11% for spine fracture and 1.2% hip, the bone density specialist aware of my vertebra fractures just advised Vit D and Calcium supplement.

Fast forward to my review with my Hematologist decided we should try Warfarin, it took two weeks of daily visits to hospital for INR regulation, and I suffered gastro wise on it badly but persisted, but then from nowhere two weeks ago, all my hair fell out, I have gone from shoulder length thick hair to just a few wisps left. Today I finally crumbled and called my Hematologist and he has pulled me off the Warfarin, and put me back on Dalteparin Injections. I am distraught, I was doing fine on Dalteparin.

This is two anticoagulants I have tried, Rivaroxaban (now acknowledged by my Hematologist not suitable for APS) blacked out on it and had an allergic reaction, and now all this hair loss, including eyebrows.

I guess what I am writing to ask, should I really put my foot down and insist I stay on my LWMH, it suited me (and my tummy), because emotionally I am about spent, I cannot keep chopping and changing like this, and I think it unreasonable to keep doing this, because of what I perceive as a Rhuematologist fixated on bone density, when I have been advised risk is low of Dalteparin aggravating matters.

So sorry so long, but unusually for me, I am at a very low place.

[lupus-support1 Administrator]

I am sorry to read your story!

Re: bones

Has your specialist not prescribed medication? I was found to have lost 75% of bone density in my hips (Neck-cervical spine normal - common in inflammatory diseases) in my mid thirties. I was prescribed medication which not only stopped the deterioration, but increased bone density.

Unless there are contraindications for you, why has this not been discussed?

I will give an analogy. Dr Hughes prescribed oral MTX as the injection was not approved at the time. It made me very sick & he ordered me to stop as I had no quality of life. He put me on AZA of which I was allergic, but that's another story! The point I am making is that you deserve a high quality of life, which is not what is happening!

This is YOUR body. You have every right to make decisions. IMHO, I think you should get an appointment with your consultant asap to discuss your treatment.

I am not surprised you feel "low". If you want to talk, PM me.

With good wishes,

Ros

[LupusKaren in reply to lupus-support1]

Thank you Ros for your reply. Yes bone density medication is being pushed hard by my Rheumatologist, but with the bone density specialist not agreeing, and my not wanting to take the Infusion (cannnot take pills) unless I have to, as I have very serious reactions to many drugs, and the side effects of the infusion are very worrying for me. I have no clarity.

[MaryF Administrator in reply to LupusKaren]

Please do insist on the medication that suits you, and also take your most trusted relative, friend, neighbour or colleague with you to any appointment, also as you are currently so unwell you need to get your Thyroid, B12, D, Ferritin and Folate checked as they may be only concentrating on one thing. You need to be on a medication that keeps you stable, and if you are needing bone density medication, that needs to be weighted up and prescribed by the right person. Ros has given you some great advice and I agree with it. MaryF

[judes]

Others have given you great advise and I would echo what Mary said take someone with you at your next appt for back up.

It’s your body, your health, and you have the right to decide what is best for you. Docs aren’t gods!

J

[HollyHeski Administrator]

Yes you should put your foot down, as the others are totally making you ill, I've tried the others too with unacceptable results, now been on clexane for over 10 years, bone scans are ok, I do get 'remind me why you can't take warfarin?' I just repeat why.

As long as you know the risks, you should have Dalteparin.

Hope you feel better soon x