I have just been diagnosed with TAK. I started last year with severe headaches, constant dry cough and aching joints. I then got covid in December and thought it was all down to that. I ended up having long covid. I had the 1st vaccine and my headaches became even worst with my vision becoming blurred. At some points I could hardly walk with my knees and ankles and my wrists and elbows were causing so much pain.
Eventually they started to treat me for Temporal Arteritis and I had a biopsy which was clear. I have a CT scan and an MRI scan on my head which were both clear. I was started on Prednisone and each time they lowered my dose my headaches would become angry. They decided to send me for a Pet CTscan which then gave the diagnosis of Takayasu Arteritis. My Aorta is inflamed and they have now given me Methotrexate to start, which I will be starting on Saturday.
My own GP didn’t even know what TAK was and the consultant at the hospital said she didn’t know too much about it as it is so rare in the UK,
It would be good to talk to someone who has this or has had it and can give me some idea of what to expect etc. Or even just a friendly chat.
Thanks
Written by
DawnMezza
To view profiles and participate in discussions please or .
I hope someone who has experience with Giant Cell Arteritis sees this and responds. It sounds like the doctors tried to lower your prednisone dose too soon and too quickly, which would explain why the symptoms worsened so much when your dose was reduced. How long have you been on prednisone and what kind of dose have you been taking? What was the way you attempted to taper (how much at a time, how quickly)?
And I should add, welcome to the site, although I am very sorry for the reason you are here. Also, not sure, but you may also want to post in the Vasculitis community: healthunlocked.com/vasculit...
In that case I would say you have reduced too quickly…and that for the time being you actually need to be on 20mg.
Found this re meds - so the treatment sounds very similar to GCA, so I’m sure we can help
Medications
Talk with your doctor about the drug or drug combinations that are options for you and their possible side effects. Your doctor may prescribe:
Corticosteroids to control inflammation. The first line of treatment is usually a corticosteroid, such as prednisone (Prednisone Intensol, Rayos). Even if you start feeling better, you may need to continue taking the drug long term. After a few months, your doctor may gradually begin to lower the dose until you reach the lowest dose you need to control inflammation. Eventually your doctor may tell you to stop taking the medication completely.
Possible side effects of corticosteroids include weight gain, increased risk of infection and bone thinning. To help prevent bone loss, your doctor may recommend a calcium supplement and vitamin D.
Other drugs that suppress the immune system. If your condition doesn't respond well to corticosteroids or you have trouble as your medication dose is lowered, your doctor may prescribe drugs such as methotrexate (Trexall, Xatmep, others), azathioprine (Azasan, Imuran) and leflunomide (Arava). Some people respond well to medications that were developed for people receiving organ transplants, such as mycophenolate mofetil (CellCept). The most common side effect is an increased risk of infection.
Medications to regulate the immune system. If you don't respond to standard treatments, your doctor may suggest drugs that correct abnormalities in the immune system (biologics), although more research is needed. Examples of biologics include etanercept (Enbrel), infliximab (Remicade) and tocilizumab (Actemra). The most common side effect with these drugs is an increased risk of infection.
Although this is the first forum to come up when you type in TAK, not sure there is anyone else on it with same illness. As HeronNS suggested the Vasculitus forum may prove more fruitful, you have the link.
We do have many on here with GCA, I did myself, and certainly some will be able to advise on MTX.
See how you get on with other forum , but please feel free to come back to us and we’ll help if we can.
Send me a message - just tap on picture - takes you to my profile- and message option. Only visible then to you and me….and tell me when you’re in Dorchester.
So sorry to hear about your diagnosis & with it being rare in the U.K. it’s difficult to find many people with it.
I take Methotrexate & have written about it at length which you will find in our FAQ Page which l will add a link for - l think you’ll find ‘Tips for Taking Methotrexate’ helpful.
I will to a little research & see what l can find out for you as we used to have a guy from Japan who used to contribute to the Forum a while back…..
Glad to help even if only a little, if you have any issues with nausea caused by Methotrexate there are Injections available & are very easy to do, l find them less fiddly than 10/12 tiny tablets (l was put on them because of possible absorption issues)
I found the guy l mentioned above but he did in fact have PMR not TAK - he lived in Japan but was European.
I had a quick Google & there is a lot on information on American Sites so l’d look at John Hopkins or the Mayo Clinic - stick to reliable Forums.
Our Ambassador PMRpro will be around tomorrow, she has a wide knowledge so maybe be able to point you in the right direction. (I have included her in this reply)
Please stay around with us if you think we can be of more help with the Steroids & Methotrexate (MTX) you may find our Abbreviation Guide on FAQ useful - as you’ll have already discovered acronyms are used frequently.
Hi MrsNailsI have been in severe pain with my head and temples and chest pain. I called the hospital who have increased my Prednisone back up to 40mg from 17.5mg.
Tomorrow night I start the MXT which I am bit looking forward to as I am sick usually with paracetamol. I have no energy at the min before I start the MXT.
I called my boss and explained to her what was going on. She told me hot to worry today and not to make any decisions, but call her on Monday and let her know what I want to do!!! I don’t think I will know after just my first treatment.
I have read that the MXT can make you breathless. Do you know if you can take Ventolin to help with this? I forgot to ask the rheumatologist.
I am just trying to prepare as much as possible for any eventuality. I maybe going over the top.
Bless you, you are having a tough time - what you’ve read about MTX making you breathless that wouldn’t be initially, more if there’s an impact in your lungs & that takes time. Are they starting you on a lower dose to begin with?
Don’t forget to drink plenty of water which is a bit more difficult if you are taking it at night but take some water to bed with you.
I wouldn’t worry too much about work on Monday, you’re the most important…..
I’ll send you a link l use to cross check all my Meds against MTX - you can add it to your desk top & keep it for easy reference.
I’ll post this reply first then attach it for you & check out Ventolin first.
Regards
MrsN
This is the Link l use to Cross Check Meds(Ventolin & MTX not mentioned in the link below)
Hi I was diagnosed with large vessel vasculitis July 2019 , they tend to say tak in younger patients, I was 59 . Struggled for some time with steroids and methotrexate not getting inflammation under control. Tocilizumab prescribed from November 2019 which improved things immensely. Please feel free to ask any thing that might help
I'm in the same boat as Devoid. Originally, it sounded a lot like TAK. The age thing, plus some missing symptoms (weak pulse, differential blood pressure in arms) made them go with just general LVV. Another possibility was GCA, but not the temporal kind.
I too had multiple scans that showed an inflamed aorta as the primary problem. I'm fortunate that it's responded well to Actemra, though now I'm dealing (as most here seem to be) with pred tapering issues.
So, there is hope. This is a good group. Hang in there, and keep in touch.
Hi. You must be all consumed at the moment with your diagnosis. Tak is diagnosed in someone under a certain age as you are, similar symptoms in older people might be classed as Giant Cell Arteritis (GCA) or Large Vessel Vasculitis (LVV). I was diagnosed with LVV as I didn't fit either TAK or GCA but had crossovers. As DorsetLady says, you have had your prednisolone reduced extremely quickly, and if your eyes were affected that needs monitoring closely. Do you have a good optician/ophthalmologist near you. I would make an appt and tell them your diagnosis and that you want them to check for that. It's a shame your consultant is not familiar with your diagnosis, it might be worth looking into a consultant in the surrounding area who is more familiar with it. I am not on Methotrexate, I have Tocilizumab which you self inject once a week. There are quite a few of us on here who are the same. It's good you had the PET scan and have got your diagnosis and have started your treatment. It might be worth writing things down when you think of them so you can ask later. Also how you are feeling. I started a low carb diet as soon as I started prednisolone which has helped me a lot. I have not gained any weight, in fact I have lost some, but I have been very strict about absolutely no refined carbs - bread, potatoes, pasta or rice. I don't get hung up on the carbs in other foods. You've had a shock and it needs time to take in. This is a great place to ask questions and it's brilliant you found it so quickly.
I'll just add a little tip regarding Methotrexate (from my own experience of taking it since December 2017) which is to take it at night shortly before bedtime. I set an alarm for 10.30 p.m. every Friday to remind me. When I took it in the morning, it absolutely knocked me out, meaning I spent the rest of the day on the sofa. When I take it at night, I'm reasonably awake and alert the following day.
Good luck for the future and I hope you start feeling better soon.
Hey All, thank you for your support and wonderful information. I do have a few questions to ask. I am not sleeping at all at the moment thinking about it and everything. So here goes….
1: are there certain foods I should and shouldn’t eat?
2: should I have a flu jab, pneumonia jab and shingles jab?
3: did many of you lose hair?
4: I work full time in a couple of private hospitals, so you think this will be affected and do you have any advice on this and how I tackle work?
5: a few people have mentioned I start the ball rolling with some benefits just in case I cannot work, is this the case and if so, do you know what ones? I’m not clued up on any of this.
6: the effect it has had on your family?
7: what specialists should be involved? I saw a neurologist yesterday and he told me that as I have now been diagnosed for my symptoms he doesn’t need to see me again and everything will be left for the Rheumatologist.
I can’t really answer No 5 and 6 as I am self employed and live alone, but this is my response to your questions..
1. I think in terms of steroids possibly making you gain weight, a low carb diet is a good idea. I also have fermented foods to help with gut health. Kefir, Kefir yoghurt, kimchi etc. Good amounts of protein and vegetables. I have increased my calcium diet due to bone health which steroids can affect so it is worth looking at that. My diet has never been so healthy since my diagnosis, ironic I know. I live alone, so I can suit myself, I imagine it’s not easy with a family if everyone is eating different things. There are also good recommendations on here regarding some people who are taking supplements. Vitamin D is a good idea in general.
2. Flu jab is definitely a good idea. You would need to see if your GP practice would offer you the pneumonia one. I would hope they would due to your diagnosis, but your age might make them resistant. Shingles is a big no no in the UK as ours is a live virus and so not recommended for immuno-suppressed patients. Have you had Covid vaccinations?
3. I have had some hair loss, but it doesn’t necessarily happen to everyone. Others may have suggestions for that.
4. How are you coping working full time? That sounds pretty tough. I had to stop working for 8 months as I had a full on job often working 12 hrs with no breaks. I now only work a few days a month as if I work two days on the trot I am useless for the next couple of days. You need to look after you. If you are employed (I am self-employed) would you be able to reduce your hours at all? It’s how you feel I guess, but maybe you can speak to someone in your hospital.
7. You should be under a Consultant Rheumatologist. Have you been referred to one?
Yes I am under Rheumatology but keep seeing different consultants. In 3 months I have seen 3 different ones.
I work full time and have staff that I manage, plus I travel just over an hour to get to work. So I may have to speak to work and put them in the picture.
I maybe able to 2-3 days a week. I will have to speak to HR I think. I just don’t know what to expect, but almost everyone seems to be saying the same thing with being unable to work.
Regarding the vaccines my consultant told me to get the shingles jab? But then I did read bot to have any live vaccines.
Yes, that would be a help, I would like to think that HR will be sympathetic and try and find a good solution for you. You need time to take it all in. Everything is a whirlwind at the moment I am sure.
I think your consultant needs to read up a bit more!
Just to agree with Sophiestree regarding vaccination. Once the new shingles vaccine is available to you then you can feel safe to get it, the live vaccine is not a good idea. Both flu and pneumonia vaccines are a good idea. I was offered the pneumonia vaccine my first wimter on pred, although where I live it has usually been reserved for people at high risk. I guess my doctor thought I was now high risk. That was also when I started to get an annual flu shot which I had felt I didn't need before. My husband has had two pneumonia immunizations - they cover different strains, and are given at least a year apart, so that's something to keep in mind for the future.
Thank you Heron and Sophie for the advice. It seems my GP and Rheumatologist don’t seem to know a great deal about it and are offering the wrong advice, which is very worrying as I don’t know what is right and wrong at the minute.
We've learned through patient experience about the live vaccines, and some doctors do know, others don't. The next patient who presents to your doctor with similar symptoms may get much more competent care. On the other hand maybe it will be years before they see someone else with your condition. They need to admit when they don't know and send you to a specialist, and at least brush up their reading.
Hi DawnRe Hair Loss - Methotrexate won’t cause Hair Loss Per se as we don’t take it anywhere near the full Chemo Dose however Autoimmune Conditions can affect your hair as can Prednisolone, what kind of dose have they started you on?
You really need to find a Specialist in TAK even if you have to travel as your Reviews could always be done on the telephone, but you might have to make it a mini break for your first appointment 😉
I see DL has answered many of your other questions.
Yeah I think I am going to have to do some research. It’s like finding a needle in a haystack - where to begin, when you don’t know what you’re looking for or what to expect.Prednisone they started me on 30mg then cut me gradually down to 15mg, but I am now on 17.5mg but up and down to 20mg as and when they say. I’m going to have to do my homework.
I was diagnosed with PMR and GCA 01/19. Although I did not have the biopsy. I have read the findings are 50/50 as far as correct. I did have a ultra sound on my temples that was clear. I was not really having headaches at this time but my rhumy insisted I had GCA. I do have PMR for sure. Rhumy started my on 60 Mg with a slow taper. I finally was down to 5. Once I hit 4 headaches came back along with the unbearable hip and shoulder pain in the mornings. Went back up to 20 and tapered down to 7. I starred having weird headaches in April. Headaches started at 4 am. Once I got up they started to go away. I did not feel this was GCA? I went to a neurologists she does not think it is GCA either. I had an MRI last week I have not seen results yet. Had appt with my rhumy regular check up and of course he believes it is GCA. I am back on 20 with taper. I guess if they stop it is GCA? I have not heard of TAK until now.
I live in the US. What I have learned is everyone is so different.
Hi Dawn Mezza. As others on this site have already said, the closest condition to yours appears to be GCA. I have a diagnosis of GCA. My temporal biopsy was inconclusive although there was some inflammation and my inflammatory markers were very high. I was on 60 mg of prednisolone at the beginning and after 18 months or so, I have reduced my pred to 3mg daily. There have been points in my journey where I have had flares and experienced headaches, temple pains and fatigue. I would then increase my pred slightly before starting my taper again when things stabilised. I was prescribed methotrexate as a steroid sparing drug. I felt fine on this,although my hair became very thin and brittle. I was told by my rheumatologist to stop taking methotrexate after a few months as it was adversely affecting my liver. I am now on Leflumonide which seems to be ok apart from some occasional bowel issues! I am wondering if the reduction in pred has been too fast and too much. The important thing is to keep the inflammation down.
It must be so difficult when the medical professionals know little about your specific condition. Can you research a doctor who has some specialism in the condition? As it is so rare, this might be a challenge. Look after yourself and keep us updated on your progress.
I hope you get sorted BarnumandBailey. I have realised there are so many different things I have never even heard of and didn’t even know they existed. Along with what the medication does to our bodies but we need to take them, even though we may feel even worse than before we start them.
There is a site NORD National Organization Rare Diseases (raredisease.org) that has informative articles; maybe helpful in understanding the diagnose of TAK. Believe it is USA. Just plug in the disease name in “search” to locate info on it. The site also lists different foundations relating to disease. Hope this is helpful! 🤗
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Has anyone been diagnosed with Temporal Arteritis had the blood test positive the first time , had the biopsy done about 5 days after being 
Just been diagnosed with GCA
New with Questions
slightly anxious and just looking for moral support 
Do I have to go up to 60mg pred again?
