gestion d'une éruption

Os, articulations et muscles
1

I have GCA and am becoming despondant by lack of progress on rteducing Pred.

Since last July I've been on 60 mgs daily for 7 months, 50 mgs for a couple of months and trying to reduce for the rest of the y

I get so far & the symptoms return.

Each attempt to reduce has been slower than the one before and the best i've achieved was 44mgs a couple of weeks ago.

Then I had to have an emergency root canal on a wisdom tooth & that was followed by a return of symptoms!

After waiting for 4/5 days to see if this really is a flare up & following discussion with 2 very supportive Gps at my surgery, I agreed I should up the Pred for a bit to 46mg. ( the last dose that held the symptoms in check)

After a week there was little  improvement and we agreed that I should go back up to 50mgs.

After 2 weeks,on 50mgs there is still no improvement

ESR started to rise slowly 2 weeks ago from 5 to 14, then 16,.2 days later on a repeat blood test ,CRP remained normal at 4.

Another week later (today), ESR is 26, CRP is still 4.

Symptoms bearable but present.

I think this flare is unresponsive to the 50mgs & I may have to go back to the begiinning again at 60.

Have I got this right? Has anyone else experienced this kind of difficulty?

Jean

 

2

Oh dear Jean, what you have been through? I can offer no help or suggestions as I have never been so unlucky to experience what you have. Hang on in there, someone will be along to offer some help. All the best, christina 

3

Jean, was your GCA confirmed by biopsy?  What were your original symptoms and did you have a good response to the steroids within a week or two, or even just a few days  

Occasionaly, there are patients who need an even higher starting dose than 60mgs to get their inflammation under control, but it is concerning that you were kept on as high a dose as 60mg for as long as 7 months.

It isn't unusual to get an infection after root canal treatment as it is quite an invasive procedure.  I assume that your dentist prescribed antibiotics as a precaution, knowing that you were on steroids?  If there is an infection then that could account for the rising ESR.

Can you tell us a little more, including whether you are under the care of a rheumatologist, and whether other forms of vasculitis have been ruled out. 

4

Jean

What other medication are you on?

I had problems reducing, but nothing like you are having.  I did have two flares in the first two years.

However, if seems to me as if you need to ask your very supportive GPs, is there a possibility that something else in the Vasculitis range is going on.

Until the initial inflammation is held in check - and it could be you need a much higher dose and perhaps intravenously for it to work. Which does mean being in hospital under the care of a Consultant.

Meanwhile do not despair, just hang on to the fact the the pred is standing between you and total or partial loss of your eyesight, you will get through this bad patch.

You are fortunate with supportive GPs. 

5

Jean,

what do you mean when you say flare?

During my initial bout of GCA, I lost vision I my right eye a total of 9 times for 30 seconds each time. On my next flare 6 months later I lost vision in my left eye 2 for about 2 minutes each time. When I was reducing from 60mg I did it in 2.5mg steps every week which seems to work for me. So after reaching the next plateau I had a CRP test. If it was below 5 I started the next reduction. For me during reduction it was normal to have headaches now and then.

6

Wihdrawal symptoms for me lasted for about 4 days and should then ceased. My ruhmatoligst always has my CRP checked before the next reduction. A CRP of 0-5mg/dl is normal ;however, during several occasions when I had a cold, cataract surgery or root canal he allowed a CRP of 5-10mg before I could start the next taper. One time it went to 13 and I had to go to the previous dose for a month.

7

CRP and ESR are guidelines and guidelines only.  Some people with PMR and/or GCA never ever have raised markers.

Hospital Trusts in the UK do not all use the same scale.  So quoting a scale that is applicable and acceptable in your area may not be the same as another area.  eg  my hospital trust anything between 8 - 13 acceptable for CRP,   ESR will that varies with age.  grrrrrrrr.

8

Thank You for the info. 

I have wanted to win the lottery for a long time and I with  GCA I have.

Aproximatly 13000 people are diagnosed with PMR/GCA a year and the rough population of earth is 7 billion. My chance of getting our disease was 0.0000001857 to 1. We are lucky'

9

Thanks Christina - I've noticed how supportive you always are to new "posters". 

All the best to you.

Jean

10

Hello Mrs O

My GCA isn't "new". My Gp & I have tracked it back to 1997 and it would have been diagnosed back then, by my 2nd opinion rheumy, as Takayasu's Arteritis.

I was hospitalised for 9 days in 1997 & given paracetamol (even with blurry eyes) and told to "chill".I was told, at 49, I was too young to have Temporal Arteritis.

I asked to be discharged & sought the help of a homeopathic MD, who calmed things down for me & I used the homeopathic therapies for a few years when things flared up from time to time.

However, this is now and my symptoms are described as Refractive GCA - recurrent & worsening/harder to control & manage, but very possible to do so by a clinical lead rheumy ( 2nd opinion) at a major hospital and offered very good advice & support to begin tapering down.This was just a couple of months ago.

It was my original rheumy who suggested we have a 2nd opinion as I was still having attacks even on 60mgs.

My attacks - my name for them as flare doesn't describe the pain or extent of the symptoms - became more debilitating in October 2011, when I was given steroids for the 1st time (40mg).

A promised biopsy turned up 3 & a half weeks later, despite phone calls & requests from my GP - my paperwork had been "mislayed".

Needless to say the bio was "inconclusive",

I changed hospital & rheumy after that fiasco. Pred dose was immediately raised to 60 mg

After a couple of weeeks symptoms had almost cleared & I started reducing until I finally came off Pred October 2013.

9! months later, I was floored with the worst attack to date and was immediately put back on 60mgs - this time we agreed a longer period on high dose  - until symptoms & bloods were indicating, without doubt, that inflammation was well under control.

And that takes us to the 8 months on 60, then to the present.

My response to 60 was good both times. I could feel improvement after 2/3 days - although  this time I improved a lot by 5 days, then it all came back again uninvited anfd it took another week to clear that "attack"/flare. I was unable to function for most of that time & was in bed in a lot of pain & feeling very unwell.

In answer to your question, my symptoms are:

Severe temporal pain both sides & extending round both sides of my head, down back of head into left side of neck & onto left shoulder.

Jaw pain & jaw fatigue whilst eating. 

Severe ear-ache both sides. Dullness of hearing left side.

Blurry eyes. Double vision left eye. Black lines across sight on waking.

Sinus pain.

Severe pain across forehead. (this is probably GCA head-ache)

FATiGUE

Re root canal - I don't have an infection & tooth & area around it are painfree & healthy.

I am having kidneys/urinary tract investifgated at the moment. So far, scan & cystoscopy, everything is good. I'm having 2 sizeable kidney cysts looked at more closely next week.

My eGFR rise and falls like a barometer & for no apparent reason - another line of enquiry.

Urology Consultant thinks high levels of Haematuria could be due to the long term nature of my GCA - more work to be done.

I'm assuming that what I'm experiencing is all part of the "More

difficult to control" aspect to my GCA & I just have to persevere.

2nd opinion rheumy has ruled out all other forms of vasculitis.

My flare this time comes & goes - echoes of what has happened in the past, but I'm up & about - albeit unable to do very much.

After 2 weeks back up to 50mg I can't say I feel any improvement & have been wondering if I need to go back to 60. Rheumy has indicated avoiding returning to 60 as he'd now concerned about myopathy & effects the side effects are having on me.

Sorry this is so long - it helps me to see it set out like this & be ready for appts!

Jean

11

Hello Lodger

Thanks for your encouraging message.

I'm only on Pred at the moment.

Rheumy persuaded me to try 7.5mg  Methotrexate alongside the Pred December 2014.

40 mins after taking 2nd weekly dose, I went into AF and now have to take large doses of Bisoprolol &anti-coagulate with Warfarin.

I was persuaded to continue with this protection for another month. I didn't FEEL any better but I managed to reduce Pred to 40.

Again I was persuaded to try an extra 2.5 mg MTX, taking the dose to 10mg weekly.

4 days after starting thie new dose, my eGFR had crashed to 27!

Rheumy immediately took me off MTX & 2nd opinion Rheumy is adamant I shouldn't have MTX again.

I also take Lisinopril (BP), Aspirin, Omeprazole. Trimethoprim

I was interested to read what you said about the intravenous Pred & will keep that in mind for my next appt in 3 weeks time.

Jean

 

12

Hi cc

Thanks for your reply.

 My latest reducing plan was 5mg every 2 weeks from 60-50

                                              3mg to 47

                                              2mg to 45

                                              1 mg to 44 

Not even out of the therapeutic range before flare up.

GP is now suggesting reducing in 1s regardless of where I am on the dosage scale until I get to teens (if that day ever comes).

I have blood tests before I reduce. CRP is normal at the moment,  ESR is rising& I know that can be due to infection/inflammation.

Either way it's not reccommended to reduce until everything's good & I'm feeling well. I was interested to read that you have headaches now & then.

Maybe I don't have to wait until I'm in the Peak of health before reducing!!

All the best.

Jean

 

13

A very positive way to look at our situation!

14

Yes it's confusing when talking with others about "normal" test reults. 

I've just become used to mine being between certain numbers. Rheumy often tells me "oh I'm not concerned about that".

15

Jean

I have A/F and am on Warfarin, and when put on that the Aspirin was stopped immediately.   Never taken the others.

 

16

Jean

There are trials going on in the UK and other countries with a drug called Tocilzumab it might be worth exploring.

A Study of RoActemra/Actemra (Tocilizumab) in Patients With Giant Cell Arteritis.

17

I feel for you Jean, and sorry I can`t suggest anything, maybe when Eileen returns from China, she may be able to advise you....

18

Are you under a rheumatologist or a vasculitis specialist? I'm assuming it is only rheumys you have seen - where are you, UK or US? It is possible you don't have GCA as such - especially if the dx was made on the basis of symptoms, a positive biopsy is a very useful thing in that sense - but some other form of vasculitis which doesn't respond ideally to pred. Autoimmune disease is a difficult field at the best of times and rheumatologists are possibly not the best people for a patient with a vasculitis that is wearing the GCA overcoat..

19

Jean, you say "2nd rheumy has ruled out all other forms of vasculitis" but I'm wondering how he has ruled them out, ie what tests.  For instance, have you had a PET scan?  Not sure if you are in the UK in which case these scans are only available at a few centres at present.  However, they are proving a better diagnostic test.

Apart from the MTX, the on-and-off high levels of inflammation may also be contributing to your fluctuating eGFR.  Towards the end of my first year of illness (undiagnosed PMR), I was diagnosed with a reduced eGFR (CKD3) and was a bit alarmed especially as I only have a sole kidney.  PMR was eventually diagnosed when GCA arrived on the scene.  Luckily, I responded well to the 40mg steroid starting dose without the need for any steroid-sparing meds such as MTX - that would have been an added worry in view of my CKD.

I can well understand your rheumy wishing to avoid returning you to 60mg Pred again but meanwhile you must be desperate to find a definitive diagnosis and a treatment that works.  Is there not an 'expert'  you can turn to for advice - we have several in this country in the rheumatology field who we recommend to patients struggling to get a diagnosis.  We are lso in touch with several people who have eventually found more success under a vasculitis specialist.

I hope the above makes sense as I've had two lengthy telephone calls whilst typing it!   

20

Jean

You need to see a Vascular Consultant - they specialise in all forms of Vasculitis.