Off to the rheumatologist today

[Sarah Tee]

Really hoping this goes well. Keep your fingers crossed for me, everyone!

Am hoping rheumatologist will prescribe a low dose of immune modulating or suppressing treatment, maybe a DMARD, based on the fact that the only things that have helped me (apart from vasodilators) are prednisolone tablets and albumin infusions.

I cannot seem to get the vasodilators to a therapeutic level without running into side effects. So maybe a combo of a DMARD (reduce bad antibodies) and a CCB (reduce vasodilation caused by bad antibodies) will work.

I don’t want to take steroids again really, although they did make me feel great during and afterwards (partial remission for three months!). And the albumin infusions were a hassle due to travel, and then only helped for about 48 hours.

[Sarah Tee]

Well, it went okay. He has ordered some blood tests and agreed to try me on plaquenil. Although he said “for three months” and from what I have read you really need to try it for six months to be sure. But I guess we’ll cross that bridge when we come to it!

I doubt the blood tests will show anything. Whatever the antibodies are in OCHOS, they won’t be on current tests. And I don’t have any classic signs of rheumatological diseases.

(Dr Novak believes that in one type of OCHOS, the type I have, antibodies are causing vasoconstriction in the cerebral arteries or arterioles.)

[Pistol]

@Sarah Tee I was on Plaquenil for a year, ordered by my autonomic specialist. I tolerated it well but decided to see if there is a difference when I dont take it and there was none, so I stopped it. Funny thing is that while I was on it I developed autoimmune vasculitis following a bad COVID infection and sepsis. It did not seem to do anything for the autoimmune problems. 

And yes, you are right - Plaquenil does not start to take effect until you take it for at least three month. Make sure you get an eye exam before starting it because it can cause blindness and they need to check your eyes every year for this. 

[MikeO]

7 hours ago, Sarah Tee said:

Well, it went okay. He has ordered some blood tests and agreed to try me on plaquenil. Although he said “for three months” and from what I have read you really need to try it for six months to be sure. But I guess we’ll cross that bridge when we come to it!

I doubt the blood tests will show anything. Whatever the antibodies are in OCHOS, they won’t be on current tests. And I don’t have any classic signs of rheumatological diseases.

(Dr Novak believes that in one type of OCHOS, the type I have, antibodies are causing vasoconstriction in the cerebral arteries or arterioles.)

Good luck and hope you stick with this. Kinda thought you were taking a ACE inhibitor for the OCHOS. My Endo and nurses are also part of the rheumatology department. They did cite my splotchy skin and did the antibody testing that came out negative. They do administer IVIG infusions but i am glad not to have to go down this path.

Best

[MaineDoug]

Glad it went well enough! Have you had an ACCP test? Wondering at the reluctance to prescribe Biologics? I’ve been on most. Currently on Humira. Weaning from Prednisone. 

Most of the Biologics don’t have “doses”. Humira is usually every other week although weekly and monthly are done but the amount is always the same. 
 

I’m hoping that I’m able to get off of prednisone after 14 years! At 7 mg now. 
 

Best news at my end, I’ve got a surgical date for my Total Hip, March 18! Can’t wait!

[Pistol]

10 hours ago, MaineDoug said:

Best news at my end, I’ve got a surgical date for my Total Hip, March 18! Can’t wait!

Wonderful! My friend just had her hip replaced by robotic surgery and does GREAT! I so hope all will go well for you. Hang in there until then!

[Sarah Tee]

Thanks folks for all the comments.

@MikeO, you’re right, I’m still working on finding an ACE inhibitor or similar, haven’t given up on that angle. So far I can only tolerate low doses – helps a bit with OI symptoms but not enough to function. Once I get to something approaching a therapeutic dose, the side effects appear. Sigh.

I’m hoping that a combined approach of immune-type treatment and vasodilator will work.

The plaquenil will hopefully reduce the bad antibodies that are causing my cerebral arteries to constrict, taking me partway to normal. Then the ACE inhibitor (or other vasodilator) will take me the rest of the way to normal, or at least to functional for everyday activities.

It’s a punt. No-one knows which antibodies cause OCHOS. I suggested it because it was the safest option in the DMARDs that seemed vaguely plausible and that the rheumatologist was likely to agree to.

[Sarah Tee]

@MaineDoug, that’s so great about your surgery.

The rheumatologist thinks it’s too big a risk to try biologics. Who knows, I may change his mind. I may not be “sick enough” in some ways, but I’m rapidly approaching 50 and getting desperate and worried about my future alone as a disabled person.

Recently I’ve really suffered because of the cognitive difficulties.

Plaquenil is three to six months to see effects, another big chunk out of my life.

I lurch between mild hope, absolute panic, and slightly numb in front of the telly. I need to have major bowel surgery but the cognitive difficulties are making that impossible. My dad tries to help me but he has mild hearing loss and no matter how often we ask, doctors won’t speak up, so he just can’t hear what’s going on in appointments.

Nothing compared to your recent difficulties. Did you get the injections? I do hope they helped.

[Sarah Tee]

@Pistol, I’m sorry it didn’t do anything. I will book my eye exam now. Should have one anyway given my age.

It’s all so unbelievably sloooow. I found out my OI was auto-immune in August 2022 and it’s taken me until this week to see a rheumatologist. Part of this is my specialist not wanting to talk about it until my dad intervened. Then I had to postpone the appt once because my dad was a bit under the weather (nothing serious but he couldn’t drive that day). That was another few months.

I am feeling a bit panicky because my dad is 82 and I have no other support nearby. He is very healthy but I never imagined this would drag on so long. I hate taking up his retirement.

A bunch of rotten stuff happened with a GP this year and we still have to clean up the mess she made.

One silver lining is that the unpleasant skin condition she failed to treat properly is sometimes treated systemically with plaquenil. Nobody would ever prescribe it for me for that purpose here in the backwoods, so yippee!

[Sarah Tee]

@MaineDoug, I have an order for various blood tests before he will start me on plaquenil. The ACCP one might well be on there, I haven’t looked yet.

I don’t have any stereotypical rheumatological complaints, but I do have ulcerative colitis (or did have – colon gone) which they have just about but not quite decided is auto-immune, and an auto-immune skin condition. Plus I’m pretty sure my mum had Sjogren’s (undiagnosed of course). Plus my uncle had MND, also considered as possibly having an auto-immune component.

Quite the Rogues’ Gallery!

[Sarah Tee]

Okay, here are the tests that were ordered. Some of these might be Australian terms that are different to US ones.

CK, CRP, urine – MCS, Pr/Cr, +/- phase contrast microscopy, ANCA, ESR, LFT, UEF, FBE, C3/4, ACE, immunoglobulins, IgG4 subclass, Fe studies

I don’t recognise most if them, but I see there’s no ANA (I did have that at the start of the year).

Don’t know why he ordered the urine one. I don’t have a UTI or any bladder problems. We never discussed any such. Is there any other purpose to it? Collecting urine is very hard for me, oh dear. At least it’s not the 24 hour nightmare!

[Pistol]

@Sarah Tee does it say urine-MCS? That could be the urine test they do to check for mast cells. 

[Sarah Tee]

@Pistol, that makes sense!!!