Vertebrobasilar insufficiency

[Sandybo]

Hi all,

Just to recap, I was diagnosed PMR/GCA September 2014, started on 60mg prednisolone- pain free within a day. Down to 5mg August 2015. CRP and ESR slowly creeping up, so sent for a CT scan in October 2015, as this proved inconclusive I had a PETscan in November 2015. Results of that were large vessel vasculitis so back up to 40mg  prednisolone. Rhuemy wanted me to start taking methotrexate and I had an appointment with a pharmacist to start me off on that the day before Christmas Eve. As I was seeing rhuemy again at the beginning of January 2016 I didn't start taking the MTX and told rhuemy when I saw him that I wasn't happy about it. He listened to all I had to say and I showed him the dead slow and nearly stop reduction method a copy of which he willingly kept. He agreed I could adopt this if my CRP stayed normal but if it started creeping up again he strongly advised me to take the MTX. He told me to reduce by 2.5mg per month until I got down to 10mg.  CRP was 8.2 and ESR 40 before starting on 40mg pred and got down to 0.6 and 8 respectively by mid December. January 2016 saw CRP at 4 and ESR 14 (Christmas celebrations I guess) I then decided to cut out sugar, changed from white potatoes to sweet potatoes always with added tumeric, I had already stopped eating cakes and biscuits etc. Next I added ginger to some cantaloupe melon each afternoon and ginger to my teatime 0% fat free yogurt together with a tsp of manuka honey daily. February saw the start of a bad throat I then added extra ginger to a cup of ginger and lemon tea plus a tsp of honey and some cinnamon which I always have in my porridge each morning. February's CRP was 0.8 and ESR 9. March CRP 1 and ESR 10, up a touch due to bad throat I expect. I then decided to have fresh garlic each day, I add this to a small avocado and eat it with cucumber and red pepper - quite yummy! I also add it to soups and stews and any other appropriate meals.  April CRP back to 0.8 and ESR 8. I saw my rhuemy on Monday and he was very pleased with my results and seemed impressed with my change of eating etc.   BUT, I still have problems with my balance and fuzzy head which have increased a little lately. l mentioned this to the nurse at last weeks blood test and she took my blood pressure and then arranged for me to see my GP later that morning. He took my BP which was 152/64 sitting and 152/74 standing, he said he was not over concerned about it as I was due to see rhuemy 3 days later and  to make sure to tell him. Rhuemy after my explaining how I feel said it sounds like VERTEBROBASILAR insufficiency. He wants my BP to be on a level in a 140/80 window because of my vascular condition, so I now have to have monthly BP checks with the possibility of introducing an ace inhibitor to help control it.

I am curious if anyone else has heard of and/ or experienced this Vertebrobasilar condition?  I shall make an apt to talk to my GP about this in a couple of weeks time when he should have received a report from my rhuemy.

My rhuemy told me to stay on my present dose of 15mg pred for another 5 weeks, then reduce to 12.5 for 6 weeks after that reduce to 10mg staying on that for a year, if all is ok at that stage I can reduce to the dead slow and nearly stop method.  

Sorry once again for a long post but I know that those who know amongst you like to have the details of the condition and medication etc.

Many thanks again for all the help and advice to be gleaned from the forum.

Sandra.

[PMRpro Ambassador]

I have to say it seems a big jump from "problems with balance and fuzzy head" to vertebrobasilar insufficiency! Balance problems are VERY common in PMR and so are fuzzy head problems - both with autoimmune disorders in general and also with taking pred.

I'd been having BP swings - with dizziness when it decided to plummet but monthly BP checks weren't any indicator, daily ones didn't show a lot either, repeated ones ever hour or two did sometimes - I had to have a 24 hour Holter monitor and even then it was pure coincidence there was a measurement that coincided with the whirling pits!

[Sandybo in reply to PMRpro]

Thank you for your reply PMRpro.

I remember having a monitor some years ago before I had GCA/PMR, it wasn't much help and was decided that I didn't have a problem of any note. I think the same applies at the moment, it was just that I felt the balance and fuzzy head seemed not to be improving at the same rate as last year, but at the end of the day that is all I have to put up with unlike a lot of others on the forum, yourself included.

[Celtic PMRGCAuk volunteer]

Sandra, I haven't got any personal experience with Vertibrobasilar Insufficiency but if your rheumy  just said it "sounds" like Vertebrobasilar insufficiency, then perhaps it would help if he carried out the relevant tests to confirm it one way or the other.

Whilst your systolic BP might be considered a little raised (just wish mine was as low as that!), your diastolic is within a low to normal range so I would have thought that putting you on an ace inhibitor might have the effect of lowering the diastolic pressure too much, leading to even more of a balance and fuzzy head problem.

At the end of the day, the problem you are experiencing with your balance and fuzzy head is unfortunately par for the course with both PMR and GCA if my experience was anything to go by.  I had several falls - even slightly tripping on a raised pavement edge was enough to send me careering to the ground because my balance was iffy and my stiff knees wouldn't react quickly enough to keep me upright.  Tai Chi classes and Nordic Walking sessions proved a godsend for me.

Very well done with managing your reductions so well since that flare over a year ago, thus avoiding MTX.  You're a girl after my own heart with that diet and I'm very impressed.....well I would be 'cos it's almost identical to the diet I followed, except it's missing oily fish!

[Sandybo in reply to Celtic]

Thank you for your reply Celtic.

I found it very encouraging, as I replied to PMRpro, I am very lucky that balance and a fuzzy head is all I have to put up with compared to a lot of others.

Thank you also for your very encouraging words about my diet. I am sure you will be pleased to know the the oily fish appears about 3 times a week, that's not counting the tinned sardines...😝 Yuk! Or the tinned salmon which I love. Also I regularly eat nuts and seeds, and bread is my biggest weakness, I don't give in too often but when I do I always buy the very best bread, we have a lovely local artisan baker who makes delicious bread and can tell me what flour etc she uses in all her 25 varieties, so that is one of my occasional treats. I also have a copy of Monica Reinagel's ' Inflammation Free Diet in which she gives I F ratings for most foods enabling me to work out what is good for my inflammation and balance it with foods that have other properties that the body needs. So far it has paid off, I hope it will continue and then I may eventually be like you which is steroid free I think?

Thank you,

Sandra.

[Doralouise77]

Thank you for your post Sandybo, I found it quite informative.  I was diagnosed with PMR July/2014 and GCA July/2015.  I just had a cranial MRI this week which didn't show any vasculitis but of course that doesn't mean it isn't there.  I have been wondering if I should have  a PET scan as I have read several people have had positive results with this and nothing else.  I guess I'm thinking, it would be great to have something positive show up (I declined a TAB) but on the other hand I would have to do a 3-4 hour drive for the test, and really it wouldn't change my treatment any.  What makes me think about getting it is that I have been having abdominal and chest pain/discomfort with the flares I'm having with the GCA head pain. 

Re some other points in your post, my neurologist is looking into steroid sparing drugs and I am contemplating Plaquenil or Methotrexate.  I'm down to between 17 and 20 Prednisone daily but do still battle frequent flares.  I was on Methotrexate yaers ago when toying to get off Prednisone but was so ill at the time I don't know if I had any side effects or not.  I finally got off the Prednisone over 2 years at 1 mg per month.

I had a dietician here this week and we went over a good anti-inflammatory diet and it was very helpful.   I've been quite ill I'm not up to cooking but got lots of recipes for meals I could drink from the blender or juicer.  I'm hoping it helps.  I have seriously cut down on sugar and wheat and have been vegetarian for about 30 years although do eat fish occasionally.  I take a good fish oil supplement.  I am also taking a turmeric and serrapeptase supplement.

I'm sorry but I don't know anything about the Vertebrobasilar disorder you are having.  I do know that last visit to my GP my blood pressure was quite high, thanks to Prednsone (always have had low blood pressure) so she increased my dose of the ACE inhibitor Ramipril.  I had been on a low dose for mild kidney disease for some years but it is also for high blood pressure.

Cheers