Anyone here with Takayasu Arteritis?

[Trixiechamp]

Hi all

I've been recently diagnosed with TA, previously thought to be PMR, my age (46)!!, and PMR with a GCA overlap.

I have been to see a Private Rheumatologist after much to-ing and froi-ng and he has diagnosed the TA. I was on 20mg Pred when I saw him a few weeks ago and have upped myself to 30mg gradually over these past few weeks as I'm having increasing pain in my shoulders, hips and claudication pain in my jaw and tongue and double vision.

I recently have had a period of stress, a disastrous holiday in a camper plus a fall after a long car journey due to my legs not working properly and I feel like I'm having a flare. Even my jaw/chin starts to ache and go numb when I'm speaking at any length. Do I up my Pred again (I'm currently waiting for a PET scan and a Methotrexate prescription after referral from Private to NHS care which is taking he usual long time to get sorted).

I've previously been on 60mg for suspected GCA and I don't remember having any pain at that dose (although my brain was addled from the Pred!) just huge weight gain. Is it worth me trying 40mg? I can't function daily at the moment, even showering has to be followed by a 20 min rest and hanging up washing takes forever as I have to rest my arms in between each garment! Don't get me wrong, I can do without this but I want to be able to live a fairly normal daily life.

Thanks for any advice x x

[Hidden]

Hi Trixie,

I am sure others with TAK will be along soon to offer advice.

It's not a good idea to up your pred without a Consultants agreement, apart from anything else it will interfere with the results from the PET.

Have you had your BP taken in both arms to check if there is a difference? Are all your peripheral pulses present and has anyone listened into your arteries ( carotids, brachial etc ) for Bruits?

[BronteM]

Hello Trixie,

You sound as they you are in the same bind as me.....symptoms of Takayasu's not GCA, but 'too old'. But the treatment is the same for both, which is reassuring.

This is just to say that I'm sorry you are joining our band, but I do hope that you find the help,and answers that you are looking for.

Most importantly, I was told that if I had visual problems at any time I was to go straight to A and E or contact my consultant, as you are probably in need of extra steroids.

Good luck with the PET scan, as that was what finally gave me the right diagnosis.

In a rush as I'm off to put in my entries for the village show - just to reassure you that there is life while living with Vasculitis! Good luck.

[Chezh]

Hi there,

I was diagnosed with TAK after my heart surgery in 2014.

Luckily due to the medication I'm now in remission.

Like BronteM has said I wouldn't change your pred dose without first speaking to your consultant.

I'm seen at Hammersmith Hospital by Professor Mason and am happy with the care I have been given. I do have to travel quite a way but it's worth it!

[Ambers67]

I was diagnosed last April with Takayasu Arteritis aged 49yrs I was on 60mg of predislone tapering down 5mg weekly was put on methotrexate about 4 weeks later as well .I got down to 10mg of preds but suffered servere chest pain had to have 999 call out they think I've got inflamed aorta got MRI booked for the 8th of September and had phone call yesterday saying there booking me in for PET ct scan as well ,back up to 15mg of preds but whole body hurts fatigued and keep getting blurred vision and headache . I was told not to up my meds without consulting with my GP or consultant. I hope you get sorted soon. Oh I haven't worked since being diagnosed my whole life has turned upside down.

[Trixiechamp in reply to Ambers67]

Hi yes this feels the same! I'm so sorry you are going through this too.

I had to go to A & E a month or so ago as I had horrendous pain in my chest, neck and back and my heart rate was going crazy but this was before my diagnosis so at the time still assumed PMR and a reaction to the drop in steroids (I was on 60mg at the time)

I'm still getting the blurred vision, extreme fatigue and awful claudication pain in my lower back and shoulders on repeated movement. Also pain in tongue and jaw on eating and even talking sometimes. Currently still waiting for an appointment or something from the consultant as per usual there was a mix up and two weeks after seeing him privately I still wasn't registered on the NHS with him. I'm just hoping that something will give soon because the constant pain and fatigue is soul destroying, I also haven't worked for months as I'm self employed as a Property Manager and I can't manage the stairs in the house without looking and feeling like I'm about to explode!!

I's just soul destroying to not even be able to do anything slightly menial without collapsing in a sweaty heap afterwards. I'm sick of talking about and not being able to answer questions about 'when are you going to get better?" If only I knew! Have they mentioned next steps? Assume they will try you something else if you are still having pain?

[PaddyPop]

I would not self medicate on these drugs. From reading comments on this forum, reducing the steroids sends the body into withdrawal and resulting pain. My wonderful physio explained this to me.

Having been diagnosed with Takayasu Arteritis some 9 moths ago I was prescribed 40mgs Prednisolone and managed to reduce it very slowly until I reached 5 msg when I had a flare up. The pain in my arms and heart burn feelings in my chest returned but I now also have pain in my legs. The pain was much worse than previously. I thought it could just be withdrawal but finally got fed up and went to see my consultant - blood tests confirmed a flare up and I am now on 10 mgs Prednisolone and 15 mgs Methotrexate (much to my consultants disappointment).

By self medicating you may be making your condition worse and possibly making correct diagnosis even more difficult. It may be that a different mix of drug will help. I am assuming that your consultant is very familiar with this condition - I have discovered how rare it is but consider myself lucky to have been referred to a Respiratory consultant who spotted the Tak and was able to refer me immediately to a Tak expert.

Please speak to your consultant before altering the dose of your medication and although upping the dose may seem easy, any reduction has to carried out very slowly.