On tenterhooks

[Sarah Tee]

Today I am supposed to be having a phone consultation with the rheumatologist I saw a month ago. I hope my blood tests have gone through – his office is not open so he must be working from home for a couple of hours.

We can’t find the info about the appointment though, so not sure what time it is.

At the in-person appt he said he would put me on hydroxychloroquine (HCQ), brand name Plaquenil, pending the blood tests.

I really really really hope he goes through with it!

The other thing is that HCQ can help with another condition I have that’s been deteriorating. It’s an autoimmune skin disease. I would probably never be prescribed HCQ for it here (Australia) but if I get it for OCHOS then that’s a double win.

[Jyoti]

Fingers crossed!

[Sarah Tee]

Thanks, @Jyoti!

[Sarah Tee]

Well, it’s (mostly) good news. I will start HCQ in the new year. Woo hoo!

He only wants to try me on it for three months, but I will tell you folks here a secret: Even if I feel nothing at three months I am going to fib because almost everything I read says six months. This is the first treatment for my condition that will be getting at the cause and I am not going to stop it until I can be sure.

The not-so-good news is that he said he will not be trying me on anything else if this doesn’t work. Argh. He said the risk was too great as I am not sick enough. It’s very hard getting across how non-functional I am, especially the cognitive side.

I only have one support person, an older family member. Not to be too blunt, but when he is gone, I will be alone and I cannot manage alone in this state.

Accessing support is enormously hard because of all the paperwork, lack of support from my specialist, lack of a decent GP, and the endless wait times for tests. Will I ever get a transcranial Doppler ultrasound? Or a cognitive assessment?

But then maybe I can persuade the rheumatologist to correspond with Dr Novak (discoverer of OCHOS). I know he has put one patient on IVIg. Maybe he has put others on immune treatments?

But for now I have to not think about all that.

I managed to make some pasta sauce to keep myself fed for the next few days on something vaguely healthy. There have been many days when I couldn’t do this, so I am grateful.

[MaineDoug]

@Sarah Tee,

so happy you got med, sorry for poor treatment. 
As a 14 year severe seropositive RA’er I have a few questions Sarah. 
Have you gotten your test results? Did they do an C-Reactive Protein test? 
Why are they reluctant to medicate? What risks is he referring to? 
I know, stupid questions in light of your comments above and my recent post! 😂

I am also struggling with a lack of support. There is almost no coordination between offices, I’m not in the best position to do this job, and no one else will. 

Best wishes! 

[Sarah Tee]

@MaineDoug, I’m not sure whether I had a CRP test. The rheumatologist did a basic panel of about ten things and all came back normal. I will ask for a copy of my results at the next appointment.

Nobody know which antibodies to test for in OCHOS yet. Dr Novak might look at it one day, but there aren’t many of us so I’m not sure if it will happen in my lifetime.

I suppose he is reluctant to prescribe anything that has risks of permanent damage or infection due to a lowered immune system because “I’m not sick enough”. I also have no aches, pains, fevers or inflammation in my joints. I am a bit of an oddball in terms of being treated by a rheumatologist. I do have an immunologist in mind as well, who was recommended to me in some patient groups as very intelligent, but that means more long exhausting car trips to the nearest city.

Not silly questions at all. I am at the point where I want to pin doctors to the wall and tell them at length how this has affected my life for 18 years, how I can’t work, can’t think clearly, have emotional dysregulation, fatigue, etc. etc.

It’s affected so many things. Relationships with family and friends, my career (or lack of one), stress levels, personal development, menatl health.

So don’t tell me I am not sick enough!!!

At the same time, the rheumatologist spoke very sensibly about the risks of infection that come with the big gun medications, not only “catching things” from other people, but also the risk from the normal pathogens on your body and in the environment that are usually no problem but could lead to hospitalisation when you are immune compromised.