No end to it

[bowler]

Hello.

I have been on Pred. for 15 yrs. for GCA I was diagnosed aged 54.

In the early days when having a flare I could taper down to 5 or 7.25mgs but never been able to get below 5mgs. in all those years.

As I get older I'm getting more frequent flares of GCA [ 3 this year ] and finding it harder to taper down before my symptoms return. I am at the moment on 25mgs. which seem to be holding it off, and will stay on this dose until I feel like decreasing. I'm also getting some tingling in my head, [ worse after laying down ] and also in hands and feet, which go after I take my Pred. but start to creep back towards the evening. I don't recall reading/hearing that this tingling is a symptom of GCA.?

When I mentioned this to the Dr. it was said that it was my Electrolytes !! but I'm worried the [ tingling ] could be another form of vasculitis ? however if so I assume the usual treatment would be steroids ?

My Electrolytes are

Potassium 3.4

urea 8.8

creatinine 124

could the above readings be causing the tingling/pins and needles.?

Doe's anyone know about electrolytes ?

My ESR was 31

CRP was 9 [ both now in normal range since taking a higher dose of Pred]

[Hidden]

Hi Bowler, your potassium is slightly on the low side of normal, your Urea is on the high side of normal and you don't mention what your sodium is. It might be worth getting your trace elements checked ( magnesium, phosphate and calcium ) to see if they are ok. Are you on any other meds apart from pred?

15 yrs is a long time to have GCA. Do you see a Consultant and if you do how much experience do they have of treating GCA? It may be that you need to see a large vessel vasculitis specialist to see if anything else can be done.

I am sure that a few people on here have mentioned tingling/ pins and needles symptoms before.

Best wishes

Keyes

[bowler in reply to Hidden]

Hello Keyes

Just checked a blood test result I had in April that included my phosphate level which was 1.00 my calcium was 2.45 [ I take calcichew ] sodium 133. the magnesium wasn't tested .

I do take Lercanidipine and bisoprolol for hypertention

I also have stage 3 kidney disease

I see a rheumatologist at Addenbrooks hospital app, every 6/8 months, but they just keep telling me to up the dose of pred and gradually reduce as before, but like I said the flares are becoming more frequent.

I have tried Methotrexate and Azothioprine but the side effects were too bad for me to continue with them.

I did mention pins and needles on this site once before, but I don't think anyone had experienced it with GCA.

My next app. at Addenbrooks isn't until march 2015.

regards

bowler

[bowler in reply to Hidden]

Hello Keyes

Just checked a blood test result I had in April that included my phosphate level which was 1.00 my calcium was 2.45 [ I take calcichew ] sodium 133. the magnesium wasn't tested .

I do take Lercanidipine and bisoprolol for hypertention

I also have stage 3 kidney disease

I see a rheumatologist at Addenbrooks hospital app, every 6/8 months, but they just keep telling me to up the dose of pred and gradually reduce as before, but like I said the flares are becoming more frequent.

I have tried Methotrexate and Azothioprine but the side effects were too bad for me to continue with them.

I did mention pins and needles on this site once before, but I don't think anyone had experienced it with GCA.

My next app. at Addenbrooks isn't until march 2015.

regards

bowler

[Hidden]

Hi Bowler,

Your phosphate is ok, your sodium is slightly low. Do they think your stage 3 kidney disease is related to the GCA.

As you already attend Addenbrookes I wonder if it's worthwhile asking for a transfer to the Multi disciplinary Vasculitis Clinic ran by Dr David Jayne. It is the foremost Vasculitis Clinic in the UK and is ran mainly by Nephrologists which would cover your kidney problems as well. They may have a different take on the treatment of your symptoms or a clinical trial that you can participate in. I know they have used treatment like Rituximab in the past for refractory Large vessel vasculitis and have access to funding that other clinics don't have as they are a centre of excellence.

Sometimes a fresh pair of eyes isn't a bad thing!

Best wishes

Keyes

[bowler in reply to Hidden]

Hello Keyes and PMRpro

I dont know if the GCA has caused my kidney disease, perhaps it's the hypertention ? I did have a problem last year getting the right medication to get the blood pressure under control, one tablet Lisinopril dropped my kidney function to a low 22 [ it's now 38] and caused my potassium to raise to high level, and was called into A/E now it's on the low side !!! I am eating potassium rich food as PMRpro suggested to keep the level from dropping too much.

I do look at the vasculitis site, and have often seen the name Dr. Jayne mentioned by those on the site.

Now, do I ask my GP for a referal to the vasculitis clinic, or do I wait till I go to my Rhematologist and talk to them about it ?

I have so much going on at the moment, I'm awaiting a skin biopsy result for Bowens disease, and also waiting a scan result due to a large gall stone, as they also wanted to look at the pancreas and liver.

Lieke I said "There's no end to it"

Thank you both for yor reply's and info.

bowler

[Hidden in reply to bowler]

Hi Bowler,

Coincidentally I am in Cambridge at the moment, I have my second appt at the vasculitis clinic tomorrow.

I managed to get a cross border referral ( from Scotland ) from my GP.

Your GP can almost certainly refer you, I don't know if there is any competition between the Vasculitis and a Rheumatology service at Addenbrookes which would make it unlikely for Rheumatology to refer you on!

I would certainly urge a second opinion, if you have been treated for 15 yrs then you certainly deserve one!

I agree with PMRpro re Rheumatology and GCA, it is definitely the Cinderella of the vasculitis family. Sometimes we have to ask awkward questions and be pushy to get the treatment we deserve, difficult to do I know especially when you feel unwell.

Best wishes

Keyes

[bowler in reply to Hidden]

Hello Keyes.

You are a long way from home !!!!

I certainly will try and get a second opinion.

I hope all goes well at the vasculitis clinic.

bowler

[PMRpro Ambassador]

Your potassium is very slightly low but you haven't mentioned sodium, chloride, calcium or bicarbonate all of which are electrolytes and equally important. The raised urea probably reflects your stage 3 CKD

Try snacking on bananas, dried apricots and have some dark green leafy veg and see if it helps.

If the tingling is because the inflammation due to your GCA is narrowing your blood vessels in the arms and legs where they are smallest it could be reducing the blood flow to the nerves. That would fit with what you say - the pred reduces that inflammation for a while and the blood flow is good again but as the anti-inflammatory effect wears off towards evening the blood flow is less good again.

Like Keyes, I'm sure I have heard people complaining of tingling before.

If it were me I think I might ask if I could be referred to the vasculitis people at Addenbrookes (who I believe are very good) for another opinion about the GCA and whether it might be a more generalised vasculitis. There is a very good vasculitis forum here on HealthUnlocked - why not post over there and ask for their thoughts?

PS - when I wrote that I hadn't noticed Keyes second post - I agree with her wholeheartedly as you'll guess. I still don't quite get why GCA is under rheumies - and they are often very blinkered in their views.

[Hidden]

Keyes

I am a bit surprised that the Consultant you see at Addenbrookes is not seeing you till March 2015.

The Rheumatology Dept at Addenbrookes is involved in research appertaining to GCA.

I would ring the Consultants Secretary and ask for an urgent appointment, explain the situation to him/her.

I also wonder if you are partially steroid resistant, (this is rare but can happen) but only a Consultant Haemotologist could tell you this. If it does work out then you may be a candidate to try Tocilizumab.

Whatever you do, you must push for better treatment, 15 years with GCA and never been in remission really needs to be looked at more closely.

[bowler in reply to Hidden]

Hello Smokey

I think you have the wrong name, it's not Keyes,it's me bowler that is not seeing my rheumatologist till March 2015. that's because I only saw him

in Sept., perhaps you misread the post I sent, easy done.

regards bowler

[Hidden in reply to bowler]

Sorry Bowler, put it down to me being well into overdraft time (over 70).

Have you been with the same Consultant for 15 years?

I am aware that some people with GCA, particularly when they have GCA diagnosed later than you were, can be on 5mg or less pred for the rest of their lives. I do know three people with GCA who were diagnosed in their fifties (all three of them) the GCA went into remission within three years and to date has not returned.

If and when you do get down to 7.5mg, you need to ask for a Synathcen test to see if your adrenal glands will function after beeing on pred for so long, as they might not wake up and you would then be on pred for rest of life.

[bowler in reply to Hidden]

Hi smokey

I know the feeling I will be 70 in January.

I have been with Addenbrooks for 15 years, but over those years I have seen all different Rhematologists, and they all have ther different ways, especially whith the tapering of pred.

I suppose I have been in remission, probaly after my first diagnosis and coming down from 60mgs of pred to 5mgs, but I have never managed to get below 5mgs. I was at one time 5mgs for 2 years before I I had a flare, and it's been a roller coaster ever since. It would be nice to reach 5mgs again and be able to stay on that.

I did ask for an Adrenal gland test several years ago but was told I needed to be off pred. to have it done, however I have since learnt that some people have had it done on a lower dose.

Since hearing from Keyes and PMRpro I feel that I could have something else going on apart from the GCA maybe some other form of vasculitis ?

As I have several other health issues which I'm waiting results for I cant face going back to my Dr. yet again re this problem, [ he will get fed up seeing me, if I can get an appointment !!! ]

thanks for your reply,

bowler

[Asbeck]

I have GCA and before I was diagnosed (before I received Pred) I experienced extreme numbness in 2 fingers of my left hand. It truly was as if a steel vise were placed over them. I couldn't feel them at all. It only lasted a few minutes at a time. The GCA was in my left temporal artery. So I suspect that it was in my (?) left sub-clavicle artery and caused the numbness. There is a vascular disease called Wegener's (I think the 2nd word is) Granulomatosis. It is a scary disease. Most of the time if you get a blood test for ANCA or C-ANCA it will test positive if you have Wegener's, but not always. In Wegener's the vasculitis attacks organs, nerves, you name it. It often attacks the kidneys. The treatment includes Pred. However, unlike GCA there is always another drug along with the Pred. It is a terrible disease and with it you are horribly sick. So maybe you don't have it. Look it up. Pred has a side effect of some tingling in the extremities. I have had this and it is a different (much lesser) level of discomfort. Hope this helps.

[bowler in reply to Asbeck]

Hi Asbeck

thank you for your post

I did go on the vasculitis site as PMRpro advised me and I couldn't believe all the different forms of vasculitis there is, I read about the Wengeners, that does sound scary. If it's the pred that's causing my tingling it's the first time in 15 years that it has happened, but there is always a first time, it's the tingling and sometimes numbness in the head that worry me.

I get some pain in my thumb joints where they meet the wrist, a friend of mine had the same but hers was carpal tunnel syndrome,

I think mine is a form of rheumatism, I also have polymyalgia.

[Asbeck in reply to bowler]

Very occasionally I get a tingling in my scalp. Usually it accompanies a pain in the artery on the side of my nose, traveling up the forehead on the same side as the nose pain, and then tingling in the scalp, or the forehead pain continuing on its travels up into the scalp. The tingling is the least common symptom. I also get some pain in my thumb joints where they meet the wrist. All this comes and goes. I don't have anything but GCA and PMA. I've never had it until I got GCA. Personally, I think it's all GCA. While walking I've had mild "going to sleep" sensations in my hands. I think that's Pred. It's illogical to have "going to sleep" pains while exercising. But I'm no expert.

[Asbeck in reply to Asbeck]

Oh and also tingling in the scalp or at least a sensitive scalp sometimes even causing pain when you comb your hair is a traditional symptom of GCA.

[meadows]

I had terrible tingling in hands with PMR before going on 20mgs pred. Tingling went completely until I'd reduced to 10mg when my PMR pain returned a long with tingling in left hand. Upped pred to 15mg' still have some PMR pain but tingling almost gone again.