~Follow up on temporal artery biopsy & GCA?

[Megams]

Hello to all your dear folk

Just to say that histology concluded that I did not have GCA - I am so grateful to report this & mindful that this could change in the future.

Have now successfully reduced high dose of hydrocortisone to my normal daily dose of 15mg x 2 = 30mg.

What a relief & feel for those who maintain high doses for longer periods of time.

The procedure has knocked me sideways & really hope & pray that I will feel more human sooner rather than later.

They didn't use adrenaline as previously mentioned in my original post so bleeding was an issue for a time.

What I can say is that the higher dose of hydrocortisone aggravated my night cramps to the veins in my legs that had been ablated this year - back to wearing hosiery support at night as cramps severe enough for me to want to faint with pain & vomit at the same time when leaping out of bed.

Settling down with hosiery support so now sleeping reasonably through the night.

Pleased to say healing well where incision is but definitely don't feel at all well some days.

My head just doesn't feel connected to my body, my legs are heavy some days & nerves feel terribly shaky.

I seem to have one reasonable day & get few small chores done (at home) & maybe a little gardening if have energy - next day I am wiped out.

Have appointment to see my Cardiologist to check breathing/rhythm issues/occasional breathlessness 3 weeks from now.

My Rheumy suggested that I could look at tapering & his system:- once a fortnight drop 5mg, so 15mg morning and 10mg at night - do this each fortnight.

Decided I am not going to think about tapering until I feel more able to cope.

I have never felt so fragile but know that with each passing day I will improve and get stronger.

My Optometrist told me it takes 6 months to recover from a temporal artery biopsy.

Can anyone make comments on this please as that seems a long time to me.

Kindest regards and abundant blessings to you all once more.

[Celtic PMRGCAuk volunteer]

Megams, what a relief for you to at least be able to put the biopsy behind you now, and fingers crossed that it has correctly ruled out GCA at this stage.

I have never heard a patient say that it has taken them long to recover from a TAB - of course everyone is different in how they react to any procedure but most people I have come across say that they have experienced a bit of discomfort at the site of the incision when the anaesthetic wears off, with some taking a painkiller such as paracetamol for a few days. Just take it extra easy for a week or so until you feel stronger. I wasn't given a TAB because my symptoms were all so classic of GCA, but hopefully others who have experienced this procedure will be along to reassure you soon. However, you do have other problems to contend with and, hopefully, when you next see your cardiologist, he will be able to put your mind at rest over these issues.

Very wise to forget about tapering until your body has fully recovered from the stresses of the last few days. Lots of good luck wishes.

[Megams in reply to Celtic]

Bless you Celtic, thank you for your kind encouraging words.

I don't know what I would do with you lovely folk.

My kindest regards as always

[PMRpro Ambassador]

I do hope they are right - a negative TAB does not mean it is 100% not GCA. A positive TAB is 100% sure diagnosis.

I think that rheumy's reduction is a bit fast but if it is just a case of reducing from the short term high dose to a lower one quickly I suppose it could work so try and see what happens.

And if you do more on a good day you are likely to have a less good day the next day. Whilst it may feel like not a lot compared with your normal in the past - this is a new normal!

The Spoon Theory by Cristina Miseriando!!!!!!!!

[Megams in reply to PMRpro]

Hi PMR pro

Yes I am acutely aware that the negative TAB does not conclude 100% that it isn't GCA.

Your comment on the reduction has got me thinking because this is his tapering technique for when I am going to reduce from my usual standard 15mg x2 = 30mg daily which has been my usual dose since early February 2015.

What I am wondering if the short term high dose - 75mg 8 Sept, 60mg 9 Sept, 50mg 10 Sept until 13 Sept, then 45mg 14 Sept, 35mg 15 Sept and 30 mg from there until now has been too much for the body to cope with??

As of yesterday I note that I have the slightly raised ropey worm like "thingy" (for the want of a better description) in my left groin area which I may have torn slightly again with my wee spot of gardening last Thursday. Not sure if this is a tendon or ligament or what, no pain however.

I have done this in the past & know this added to my breathing woes especially my left side & has definitely exacerbated my breathing difficulty a little more as of yesterday & today.

I had forgotten that he told me to kneel in the garden as opposed to bending at the knees in a couching position.

In past Rheumy given me strengthening injections in lower back/spine area of Polyidocanol which worked a treat.

Interested in your thoughts on the drop from high dose and how this may have affected me??

Rheumy told me that when an asthmatic is given 40mg of Pred for a week, they are dropped back to 20mg by the 2nd week.

Want to say more but sitting at computer not helping my breathing even though have had an OT to my house recently to check posture making recommendations which were instantaneous for lower back comfort.

Kindest regards once more.

[Celtic PMRGCAuk volunteer in reply to Megams]

"Rheumy told me that when an asthmatic is given 40mg of Pred for a week, they are dropped back to 20mg by the 2nd week."

That rheumy is talking about a totally different kettle of fish!

There are illnesses, including asthma and chest infections, where short courses of steroids are prescribed, starting at a high dose and reducing fairly rapidly to zero over about 6 weeks.

PMR and GCA, on the other hand, are long-term conditions requiring long-term steroid treatment in as high a dose and for as long as it needs to get that inflammation under control and keep it there, very gradually reducing until PMR and/or GCA goes into remission and that, as we know, can take anything from two years upwards.

And, yes, with a suspicion of GCA, it's very likely that daily reductions, especially from the 60mg dose and below would have been far too fast to keep a lid on any GCA symptoms/inflammation. Plus the body can rebel quite easily at the high doses, and also when reducing from a high dose as in my case - I ended up in A&E feeling dizzy and suffering severe exhaustion within two weeks of my 40mg starting dose and immediately following a reduction to 30mg, with my heart rhythm all over the place, an irregular heartbeat kicking in - it did sort itself out but it is a lot for anyone's body to adjust to.

[Megams in reply to Celtic]

Wow Celtic...............

Thank you for this enlightening piece of information - I am forever grateful to have this knowledge.

It has become increasingly obvious to me from what you have shared that the fast reduction has highly likely sent my body into a dive & yesterday really thought I had reached breaking point, physically & emotionally.

Over last week there were moments where I had developed sensations (more noticeable when sitting) my hands and legs had developed a fine tremor - never had this before and almost as it my nervous system was at breaking point.

Yesterday I reached my crescendo emotionally and felt overwhelmed in every respect. I am a fighter and this was not like me.

Fortunately my local Priest called by to bring me communion - I was so hugely grateful for this as his timing was perfect.

After a good nights sleep (thankfully) I am more peaceful this morning I am so pleased to report.

I am however fast losing confidence in some of the advice my Rheumy has imparted.

I am almost starting to feel like an experimental guinea pig in some ways.

Again I appreciate your support.

Abundant blessings to you.

[babssara in reply to Celtic]

Again, following this thread with interest.

Your last para has me concerned. Seeing doc today. Thanks for advice, know what to report now.

Babs x

[PMRpro Ambassador in reply to Megams]

As Celtic says - that is just one week of 40mg. And believe me, they don't all cope with it well.

I would have said that you needed a bit slower reduction after being on 30mg hydrocortisone since February - that is well into "long term use of pred" territory although it is equivalent to only 7.5mg pred. A couple of months even at the lower doses we have for PMR is enough to make reduction fraught for some people and many struggle at 7.5mg and below.

The reduction from 75 back to 30mg over a period of just over a week was OK though it must have put your body under some strain, whether it was "too much" is a different question. I'm assuming these were all total doses? If so, 75mg hydrocortisone per day is only the same as 20mg pred/day - much higher than you WERE on but still not high in the context of GCA.

The BMJ best practice article says

"An example of a taper until the previous pre-illness dose is reached would be decreasing from hydrocortisone 100 mg orally 3 times daily (equivalent to prednisone 25 mg 3 times daily), down to 75 mg twice daily for 1 to 2 days, then 50 mg twice daily for 1 to 2 days, then 25 mg twice daily for 1 to 2 days, then 20 mg in the morning and 10 mg in the afternoon for 1 month (a dose that most consider being physiological). The taper can be stopped sooner (i.e., at a higher dose) if the pre-illness dose is already achieved."

[Megams in reply to PMRpro]

Hi PMR pro

Been meaning to come back to u today and thank you as always for your helpful support.

Yes those doses quoted were daily total doses and Rheumy wanted me to get up to 120mg until histology back - it was from the Ophthalmologist view point after he finished surgery that I didn't push to reach 120mg and so pleased I listened to him.

I do think that my nervous system just went into some form of radical disarray or something did.

I have been wanting to begin my tapering for a while as previously discussed but think for the moment to leave things as they are for at least another week or two.

I am looking at having 2.5mg & 10mgs caps made presently with view of tapering at a much slower pace and including 2.5mgs as opposed to 5mg tapering as we discussed recently.

I am also waiting on a sooner rather than later appointment for a review with my Neurologist with whom I relate to very well. She has told me to come back any time but getting in quickly is not always possible.

I am wanting to discuss any possible vascular issues & find an explanation for why my tongue had the hemiplegia sensation.

Thank u for the BMJ best practical article and also The Spoon Theory by Cristina Miserando with which I have yet to read.

Take good care in meantime and abundant best wishes to you once more.

[piglette]

That is interesting that you are having problems with steroids and an ablation. I had an ablation in my right thigh in May and am still having problems.

[Megams in reply to piglette]

Hi Piglette

Prior to the increase of my steroids to cover with possible GCA?, the healing with my legs appeared to be very slow, but on track.

The right leg unfortunately has not proven to be a success a the original throbbing vein appearing to have become slightly larger.

My GP says that this can happen & can take several attempts - I was not aware of this prior to the initial procedure.

This will require further treatment, but I will leave that for some time until I feel more human.

I certainly can say that after the ablation I had no further severe night cramping.

I can only conclude that there may have been (only a hypothesis on my behalf) a change in the vessels due to higher intake??

I will only know when I visit the Vein Spec in October for my followup where an ultrasound will be done.

Sorry to hear you are still having issues with yours.

Kindest regards and keeping smiling

[piglette in reply to Megams]

I am seeing the vein specialist tomorrow. I assume he will do another ultrasound, after the last one he said everything looked fine. I wonder if the PMR is slowing things down a bit and the healing is taking longer.

[Megams]

It is highly likely that the PMR coupled with our steroid meds would definitely be "slowing things down a bit" as you say.

I firmly believe our healing time takes longer whilst taking our steroids - I help my system along with juicing organic carrots/silverbeet/beetroot leaves/parsley/sprouts etc. Doesn't sound interesting but combined in a smoothie is simply yum. I grow my own except for the carrots.

I massage my legs every day with Aloe Vera & Vit E gel, plus spray a Magnesium Oil onto the muscles.

The main aim being to help gently assist the new circulation that is supposedly establishing itself plus assisting the old ablated veins that my body will in time slowly absorb & remove - hope that all makes sense.

All the best tomorrow and kindest regards once more.

[jinasc]

With those problem legs and a suspicion of GCA, which the TAB has not shewn.

I would be asking to see a Vasculitis Consultant pronto.

[Megams in reply to jinasc]

Hi Sambucca

Thank you for your insight........ most valuable.

Wouldn't you have thought that my own Rheumy would have considered this - I see him privately??

I have mentioned several times in the past that I have dents either side of my upper hair line and a new dent of last month in my lower forehead - Rheumy said months ago," they are blood vessels and we will need to keep an eye on them".

I am going to ring through to GP office this morning and leave a message on the Nurses answerphone with a request.

My Dr will ring me, so will discuss this over the phone.

Not at all familiar with a Vasculitis Consultant - what could he/she do for me exploratory wise?

Sorry to sound ignorant, learning about all these folk is vital to me.

Kindest regards to you and many thanks once more.

[jinasc]

GCA is the largest member of the Vasculitis family. Rheumatologists look after GCA and PMR because historically it was thought to be linked to Rheumatics (arthritis).

The best definition I can give is this one, Vasculitis is an inflammation of your blood vessels. It causes changes in the walls of blood vessels, including thickening, weakening, narrowing and scarring. These changes restrict blood flow, resulting in organ and tissue damage. There are many types of vasculitis, and most of them are rare.

That is why people with GCA (Yes we are rare birds, but still the largest members), about two years down the line or before are given a test on the Aorta and Pulmonary arteries.

I don't want to frighten anyone, but most GCA people are aware of this, and if not should be.

It is also thought by some researchers and specialists that PMR is also a member, but the jury is out on that one at present.

[Megams]

Thank you very much for this information.

I place my faith and belief that the "Professional people" I am consulting are giving me the best possible advice.

I'm realizing that the circle of these "Professional people" is widening with differing opinions.

I quote from letter Ophthalmologist to my Rheumy 9 Sept 2015:~ "Personally I would have thought it reasonable to wean her steroid down rapidly should biopsy be negative, as the clinical grounds for a diagnosis of giant cell do not seem terribly firm to me.

Please do tell me how they test the aorta and pulmonary arteries?

Kind regards once more.

[PMRpro Ambassador in reply to Megams]

They don't "test" then as such, the use ultrasound to visualise them and make sure they look normal and aren't stretching to form an aneurysm.

To identify vasculitis in all these other places they need to do different imaging called PET/CT or MRI where they inject a contrast substance which seeks out the inflammation and then they do either a CT or an MRI which will then show up the inflamed areas. You can find all sorts of things like that!

There are few really specialist vasculitis doctors and rheumatologists will insist that THEY specialise in it. What you probably need is someone who does autoimmune disorders and vasculitis rather than arthritis and autoimmune disorders - if you see my emphasis. Can tell you the best in the UK but not much help to you!

I assume you have big/university hospitals? More likely to be there than a district hospital.

[Megams in reply to PMRpro]

Excellent thank you for this information.

I'm fine with ultrasound should that be recommended.

My appointment with usual private Cardiologist not until 15 Oct unfortunately, as mentioned.

I wish it was sooner, however if I really felt I was in trouble would dial 111 - our local hospital is 5 minutes away.

Our bigger university hospital is in Auckland City and I am out of zone as I live on the North Shore - they would not take me there unless I required invasive head surgery.

Thank you for defining and emphasising the difference between auto-immune disorders & vasculitis as opposed to arthritis & vasculitis - would have considered the two being the same animal.

Great reading once more.

Kindest regards as always.

[PMRpro Ambassador in reply to Megams]

The aneurysm problem that is the reason for the monitoring is not something that happens overnight. An aneurysm is left up to a diameter of 5.5cm as up to there the risks outweigh the benefits of intervention. If signs are found though they monitor to see if it grows - it may not. It isn't going to be something that depends on being seen tomorrow rather than in a few months.

As for seeing a vasculitis specialist - it shouldn't matter if you are in a catchment area or not. Any hospital in the world has somewhere they can refer on to when they don't have appropriate in-house options.

[Megams in reply to PMRpro]

Hmmm... interesting reading.

I am blessed with having medical insurance so opt to see Specialists privately as opposed to being in our hospital system.

I am presently making enquires of a Vasculitis specialist via an email to my Rheumy.

A question I have also asked him is if he thinks a Vasculitis specialist would be preferable than my visit for a review to my Neurologist??

I also wrestle with the fact that I'm darting all over the place with the right person to see and for what part of the body?

You know what I mean?

Take good care & many thanks once more