Sticky Blood-Hughes Syndrome Support
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Cranial nerve blocks ( steroids injections) causing an elevated INR?

1. Just out of hospital last week for a major DVT ( arm) with low INR ( 1.9, 2.2 , etc) with accompanying migraines

2. Migraines are suspected Hemi crania continua - fits the bill pretty well and linked to APS

3. Two days ago I received 24 injections into skull of steroids- cranial nerve blocks for pain management of migraines.

4. My heme is out of the country on holiday - I'm sure he has someone taking call but they will be heme / onc . Not heme primary focused.

5. Yesterday I flew from Texas to Princeton New Jersey.

6. Today my INR is 4.6 ( my target is 3.5 to 3.8. If it gets to 4 no panic, just adjust one mg warfarin down.) yes, I have a self test ( coagucheck xs )

7. Will steroid injections cause the INR to go high?

8. I plan to have a few more greens - and either cut my Coumadin dose by 1/2 , or not take it at all tonight, and resume it tomorrow night at one mg reduced from normal regiment? This is what my hematologist has told me to do should this ever happen. I just know I have a still fairly fresh DVT in arm that's not entirely resolved...

( I have been at 16 mg for at least 5 days so 16 is at steady state in my system. )

So, do steroid injections cause INR to spike up, and best course of action in getting 4.6 down to 3.5?

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Yes...take a look here.

As for Hemicrania Continua, I was diagnosed with this almost 20 years ago and was part of a trial for an occipital nerve stimulator (Bion) in 2006 reported in the Lancet. It was explanted about 2 years ago as it died. At no time have I ever been told its linked to APS and I have one of the best Headache Neurologists in the world. Id be really interested to know where you heard that or if you have any literature on it. Thanks

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You may find this list helpful:

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APS not fab I just saw the papers you posted in this feed. They are quite full of important information, bravo

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I cannot remember where I saw the formal and reliable medical journal/ association between APS and HC, but I think perhaps it was in a post or attachment connected with one of our administrators of this forum, "sticky blood Monitor."

The only thing that does not happen to me is the forehead sweating. The big clue for me was the veins of eye lid swelling. ( and itching before migraine onset- then pain- then the swelling.) The sinus cavity involvement- especially the sinus cavity above the eyebrow of the affected eyelid.

I can almost get a slight metallic sensation in those sinus cavities during the full on migraine. It wasn't until I saw your mention of HC and the other administrators mention of it ( this admin mentioned in bio that he/ she sees dr goadsby in San Fran - neuro- for these headaches) that I realized this was likely the same type of migraines I was having. They seem quite specific. When I'm not in full migraine, there can be a little " shadow" in the background. But not bad at all. But boy when that INR drops... watch out.

I'm having trouble with link. I'll subscribe and try to ind it.


Weird, maybe there is a connection. I have occipital neuralgia. Have had it for 5 years, I was on a list for surgery when I changed chiropractors and got it under control. Wasn't diagnosed with APS until a year and a half ago after two stillborns. That's what I thought was going on when I had my stroke actually.


From what I have read yes you can have fluctuations of INR after steroid shots, but it should calm down, but of course an extra eye on this at such a time. I hope you feel better soon. MaryF

Ps my youngest son, had a migraine, severe, really severe that lasted 15 months and 4 days with no gap... it started to break up once he was on Aspirin. MaryF


I didn't suffer migraines as a teen at all- unlike most here. Only really started with them about 4 or 5 years ago. I asked my very astute gyno to run extensive panel to see if it was connected to pre menopause hormonal shifts/ imbalances/ vitamin deficiency/ etc. She is extremely thorough. All was in very normal limits.

Tylenol ( paracetamol I think you call it) , ibuprofen, acetaminophen, naproxen, didn't touch it.

The only thing that did / does help was a migraine med called Treximet. It has 500 mg Aleve ( I think that is naproxen so on fragmin and Coumadin simultaneously can't take) formulated in with it.

Now that APS is diagnosed I was switched to Immitrex. It has no NSAID formulated in. It does help- they are talking beta blockers, channel blockers, ( but I have a naturally running quite low blood pressure so maybe not this approach they say)

But apparently cranial nerve blockers are better. ? This is all pretty new to me. My doctors are not world renowned experts at all so I'm going to rely on Lynn...I very well may have it all wrong. My neuro never spoke to me about the steroids affecting the INR...


Perhaps ask if you can try Topiraimate, it's an antiepileptic and works well on different kinds of Migraine. If you have HC then the test is Indomethacin. That would stop it in its tracks. Before I could be diagnosed with HC Prof Goadsby made me do a blinded trial for Indomethacin. I could not join a trial until that was done. Unfortunately I could not tolerate it as a treatment but some obviously can. Topiraimate has worked well though so a good alternative but not if you don't want to lose any weight.


Yes. This is exactly why I'm on toporimate for epilepsy. Over two years now. 300 mg per day broken into morning and evening doses.

It's controlling epilepsy well, but it's not the only anti epilepsy med I'm on. I'm also on an older bromide derivative. I've been on Dilantin, vimpat, and lamictal, but I had a Stevens Johnson's reaction to the lamictal during a titration, so I have to be careful- and because of that I'm being closely monitored with plaquinil also. I'm having to very very slowly titrate.

I struggle to keep weight high enough-regardless of toporimate- but I always have. I'm a nice weight now- 108-111 is just fine. I just don't like going below 105. No wiggle room for APS flares which. Affect my tummy.

Is Goadsby in San Francisco?

I need to show my neurologist your info. I'll type it to his nurse.

I'm winging my own warfarin dosing - no real APS specialists here at all. Last night I took half dose. ( 8mg.) This morning my INR was at 4.5 from 4.6

Tonight I took 15mg instead of 16( normal is 16.)

I'm just making my own exec decisions. Heme is in Europe.

On May 23 this had happened and and he dropped me to 8 mg for 5 days and I clotted badly-

Huge DVT- plus micro clots to kidneys and superficial clots to legs with big painful bruises, as well as other tissue clotting. They started steroids- and were contemplating IVIG infusions- fearing the very early start of CAPS onset, because it All started at once, very quickly.


I've never managed my INR but from what I've read on here from those that do, the art is to do everything quite gradually rather than in big jumps. I see the clinics panicking with high INRs forcing people to either take much lower doses or miss altogether for a couple of times which then causes a big reduction the other way. I think small moves are the key if possible unless it's causing dramatic symptoms.


Oh, Mary...

So heart breaking. As a mother I know it must have been the most helpless feeling in the world for you. And your son!

I read once you mentioned you needed to wait to be "approved" for aspirin therapy. Even the jr strength? I'm assuming because of the concerns for Reies ( sp?) syndrome Asdociated with aspirin under age 16 -With these horrible headaches? Didn't the physician try something else in the meantime? Nothing was working?

That's a horror story. Actually makes me upset he wasn't gives aspirin sooner... needles suffering in my opinion.


OMG Kelly in Texas, my INR has gone nuts (5.77). I was blaming the increase on the addition of Nexium to my meds for gastric ulcer AND decrease in Lasix due to deterioration of kidney functions. Each of these can increase INR. But I didn't think these would increase me to 5.77. Now I know why that happened, it was the prednisone injections.

NOW, my INR is too low (2.5) due to all the downward adjustments in dosage. One thing I have convinced my doctor of though is that if I have a high INR I can't stop Coumadin for even one day. My best bet is to cut dose in half, even with an INR in 6's.

It didn't even occur to me that the 2 prednisone injections I got 5/26/17 for severe trocanteric bursitis would affect my INR! I knew ORAL prednisone could increase INR but the injections just didn't hit my Radar.

Thank you so much for bringing this up.

My biggest problem in maintaining a stable INR is that my medications are not stable. One of my dozen specialists is always changing one of my 20 prescriptions. And, my nephrologist reminded me last week, that the IVIG infusions I get for the immune deficiency can aggravate kidney functions which can indirectly affect INR. AARRGH!

And, thanks to APsnotFab for the article to show my MD. He didn't think of the INR:Prednisone Injection connection either.

If the doctors are going to change my meds around so much, then we need to be aware ahead of time which meds are likely to affect INR and to test more frequently than once a week.

Thanks to all of you!

Nancy in West Virginia

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Most of us are looking for a Specialist. Too many Specialists are not good either.

As APsnotFab says do small Warfarin-changes and I suggest you make a lot of notes what you do on different days as to drugs and INR and blood-tests. I selftest and take a test with my CoaguChek every second day as the INR go up and down. Ask for Heparin-shot to take when the INR is too low. You need help with all these different drugs etc.

Best wishes from Kerstin in Stockholm


Hi Kerstin!

I have a notebook I write anything I think can affect INR--meds, dates of IVIG treatment, med changes, GI issues which prevent eating or cause diarrhea, etc. I just missed the prednisone injections but I won't miss them again.

Yes, I have too many specialists--one kidney failure, two for heart failure, one for pacemaker, hematologist and immunologist for immune deficiency, gastroenterologist for GI issues with CVID, my GP, pulmonologist for pulmonary hypertension and bipap and hypoxia (oxygen), dermatologist and so on

It is a juggling act but for the life of me I can't figure out how to eliminate any of them

You'd think there'd be a rheumatologist but 'ain't any to be found.'

You all fill in the gaps for me.

Thanks so much!

Nancy in West Virginia

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