After an unhelpful consultation last August when I was diagnosed with GCA ( later just referred to as Large Vessel Vasculitis in correspondence) I finally had a follow up with my elusive Consultant on Friday. I have been on reducing levels of Pred since last July but became very unwell on reducing down from 30 to 20 mg in October and haven't returned to level of fitness I would expect since. This hasn't been helped by having Cellulitis and a couple of other infections Dec/Jan. My main problem is extreme fatigue, clicking at the back of my jaws and sometimes head, numbness around my mouth plus periods of blurred watery eyes and feelings of unbalance/wooziness. Prior to taking Pred I also had a lot of pain in my jaws but I have never had any soreness, pain or swelling of my joints or muscles apart from a recent reaction following an infusion of Zolendronic Acid which thankfully began to go away after a few days. I have not tended to post on this site before as most the posts didn't seem to relate to my symptoms which is why I'm asking if there are any of you who have this disease without the aches and pains. I can't remember how many years it's been since I last had a headache. I am posting now because I have been told I should taper Pred with the introduction of an alternative drug and, after considering my medical history, my only choices are between Methotrexate and Leflunomide. My Consultant strongly recommends I go for MTX. I had queried these options when proposed back in August without a response other than Pred isn't recommended long term. I have now re-read the leaflets given to me and am still concerned that both of these drugs seem just to focus on reducing joint pain and swelling which to date hasn't been an issue for me.. Also one of the main side effects seems to be fatigue which I am already trying to combat having recently reduced to 15 mg of Pred. Any shared experience would be gratefully received. Thanks
Anyone diagnosed with Large Vessel Vasculitis - ... - PMRGCAuk
Anyone diagnosed with Large Vessel Vasculitis - No symptoms of headaches or aches and pains to joints but advised to take Methotrexate?
When you first posted on Vasculitis forum I did forward my intro post from here so maybe have a look at that .. and yes there are members on here who have LVV (previously referred to as extra cranial GCA).
Would say that a reduction from 30mg to 20mg in October is one reason why you are feeling so rubbish..although some of the issues can be side effects of Pred.
Although the majority of patients on here may have PMR -there is a lot of knowledge on GCA -whichever version you might have -so it’s a shame you didn’t ask previously-but hopefully now you are here, you will get some helpful answers.
As for your consultant’s view on Pred - there are many on here who have been on Pred long term and not fallen to bits!
Not sure either MTX nor LFT will do a lot for you -but the correct dose of Pred will.
Thanks. I have always found the other post site very helpful but in response to one previous query you did ask why I hadn’t used this one so I thought on this occasion it might be best to give it a try. Previously the consultant became very agitated and off hand with me when I questioned why I should take MTX as from what I read there wasn’t much evidence that it would help. Also I know from family and other users it can cause violent headaches and stomach problems which I definitely don’t want. He hasn’t changed his view and puts my recent infections down to Pred. I also get a lot of skin tear injuries at the slightest tap that take several weeks to heal which I do accept will be linked to the steroids. He also says my symptoms might be linked to Pred so how will I know if the vasculitis has gone into remission? . I do find it a very confusing disease. Not sure how I stand if I say I want to stick with Pred which he says will be for 3 years but I guess it’s my choice in the end.
"He hasn’t changed his view and puts my recent infections down to Pred" ... "...with Pred which he says will be for 3 years ..."
Really? And MTX doesn't increase your likelihood of having infections? And LVV will last 3 years? Like PMR lasts 2 years I suppose.
What strange things to say. LVV does seem to have a mind of its own that isn't always in tune with PMR or GCA, but neither MTX nor LEF will REPLACE pred, they are suggested as steroid sparers.
pubmed.ncbi.nlm.nih.gov/312...
How were you diagnosed in the first place? And may I ask how old you are? Have you had a PET-CT scan at any point?
I get the impression he isn't entirely clear about any differences between GCA and LVV and that he may be far more at home managing inflammatory arthritis than PMR/LVV/GCA. In your place, I would be quite keen to have a second opinion, preferably from a doctor with a lot of experience in vasculitis and who is far more proactive in seeing their patient and monitoring them. And is maybe a bit more conversant with tapering in the context of PMR/LVV/GCA as I can/t help feeling that at least some of your problems stem from a 33% change in dose from 30 to 20.
Thanks it’s a complicated situation stemming from a flu jab in Oct 2023. Came close to death with an autoimmune reaction which mainly attacked my respiratory system after but after 5 weeks in hospital made an almost overnight recovery following IV Pred and 60% oxygen support. Symptoms disappeared and was Monitored by excellent respiratory consult throughout tapered Pred dose. Off Pred in May fully fit and full of energy. Then a few weeks after a nasty cold in June I was hit by a wall of extreme fatigue and return of all symptoms experienced be for being hospitalised in October. Blood markers were very high as was my platelet count. Consultant arranged a PET scan in July which showed inflammation of aortal blood vessel hence I was transferred to Rheumatology. In the meantime I had developed a lot of pain in my jaws was too fatigued to walk even a few yards and thus I was initially diagnosed with GCA and put on 60mg of Pred. As you asked I’ll be 76 next month but am usually very fit and active. The consultant does intend to maintain a low dose of Pred once I’m established on MTX . Although I’m told my consultant is one of the best for vasculitis, I have thought about seeking a second opinion but it’s tricky given his reaction to my questioning what he has proposed already
OK - at least this is a properly confirmed diagnosis and it isn't Takayasu's because they have this daft concept that it is Takayasu's if you are under 50 and GCA/LVV when over 50. One lady had been dx'd with Takayasu's in her 40s but noticed one day it now said GCA under diagnosis. And THAT was the explanation she was given!
Did I notice you have a history of melanoma? That will be why you aren't being offered tocilizumab.
Yes I had melanoma on my optic nerve. The consultant had already ruled out tocilizumab because of risk of possible intestinal damage but has since spent months in consultation with Moorfields because of possible cancer risks from MTX . Between them they have now concluded my treatment was so far in the past that the increased risk is sufficiently low to proceed but it does add to my concerns.
Hi PMRpro
You said above "I get the impression he isn't entirely clear about any differences between GCA and LVV"
Are there differences? I'm intrigued!
Thanks
Well yes. GCA is really cranial GCA, and in many cases has been proven to involve the typical giant multinucleate cells in the artery walls in biopsies. It is only possible to biopsy the large arteries in the trunk either during major surgery on bypass, or post-mortem, so there has to be some doubt as to whether the inflammation in LVV is solely due to the same type of inflammation demonstrating giant cells. It also seems to be persist longer than cranial GCA but that is just an observation on my part that could well be unjustified. Quite a few people on the forum have LVV diagnoses and hadn't had very obvious symptoms until they had a PET-CT. They know that quite a proportion of "just PMR" presentations also involve GCA - how many others have undetected LVV? And whatever - none of the three have a fixed term appointment, purely cranial GCA seems most likely to be over and done with in a few years but 4 or 5 is more common than 2.
Thanks PMR pro. I don't have GCA but Prof Hughes suggested that I "might have a bit floating around " whatever that means!!! I do get occasional stabs of pain, some hang around a bit more than others, but nothing that seems bad enough to consider GCA. I think many of us are terrified at the idea of developing that, so are constantly aware of any potential symptoms. I guess the only way to make sure is to ask for a PET/CT scan but that would need to be justified. I shall have to research LVV now as well. Goodness, this just goes on and on!!! Keeps me occupied though when I'm trying to do little else 🙄
I don't think ANY of us have only one of the triumvirate, I don't think that it says, I have arrived at a boundary and I'm not allowed to encroach on the other side, that is a LARGE VESSEL so can't go there!! I think it is all a similar problem that varies a bit in some way depending on the site it settles in. I think it has all been looked at a bit simplistically in the past. Very convenient maybe, but not necessarily USEFUL!!
Indeed. This disease is far from simple!!!!
And that is a mistake often made by people who should know a lot better - doctors! Too many think it is a simple and benign syndrome that only affects the elderly who are no longer in the workplace and can be sorted with a low dose of pred for a couple of years and "poof" - there it is gone! It jolly well isn't ...
A couple of links from out FAQs - which you may have already seen, apologies if so -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
PMRpro has responded, and other will be along I’m sure.
Thank you. The study article was particularly interesting
Hi,Yes I was diagnosed with LVV 3 years ago prior to that I had PMR but had tailored off pred and had 3 months of feeling great when a routine appointment with rheumatology came through.I thought it wouldn’t hurt to go along but at said appointment the doctor was concerned about my crp level and ordered a PET/CT scan even though I was feeling very well.The scan came through with enough inflammation for them to diagnose LVV. Initially only Methotrexate was offered to control it.After much deliberation I decided to try it,not a very pleasant med.A subsequent MRA and another PET scan has shown improvement and I have a MRA in 4 weeks where hopefully more improvement will be present.My rheumatologist stated from the start this would be a long haul,4 years of Methotrexate and I think scans for life because of the risk of aneurisms.Hope this is of some help.
Many thanks. There is a lot of info on line but nothing like hearing of personal experience. Before going on Pred My CPR levels were also concerningly high and platelet count galloping up towards 700 until I had been on 60mg for a couple of weeks then almost instantly both dropped to normal. As you had PMR I am assuming in your case you did have aches and pains as part of your LVV symptoms. Hope all goes well with your next scan
I have temporal arteritis diagnosed through a scan of the temporal arteries. I get a sensitive scalp and painful jaw, weight loss, watery eyes, extreme tiredness, dizziness but not aches and pains. Mine started from GCA and my rheumatologist also calls it LVV. I have been on varying doses of prednisone and for a long period on lefludomide and mycophenolate. I also had methotrexate which did nothing. Have flared again and just started actembra and hopefully a miracle return to good health! Good luck!
Thanks. My consultant’s preferred option was Tocilizumab (Actembra) but he felt my risk of developing intestinal issues were too great to prescribe. Did you find Leflunomide worked for you? My biggest problem with LVV is extreme fatigue but I also see this as given as one of the main side effects to the drug.
I don’t know if this will be of use to you but at my last phone consultation with my rheumatologist last December I asked a few questions which may be of use to you.As I am asymptomatic I wanted to know how to monitor my condition to know if it was getting worse.His answer was fatigue,fever and weight loss.My next question was how did he monitor my condition.CRP levels would raise his suspicions but MRA scans and PET were the only way to know for sure if inflammation or aneurisms were present.If I am lucky enough to be able to stop methotrexate I will still need regular blood and some sort of scan for maybe ever.Right at the beginning he told me medication would be needed for at least 4 to 5 years but as you may know there is no cure.I believe the relapse rate for LVV is very high.Just one other piece of information ,when I was diagnosed with GCA/LVV I had no PMR symptoms and that is the same today,no aches and pains.The only bright side I have to this disease so it could be worse.
Thanks again. I wish neither of us had this but it is good to know there is someone with the same lack of symptoms as me. In the course of on line research into MTX and LVV I did see comment of the importance of regular aortal scans to check for ongoing inflammation and aneurisms in patients who are asymptomatic but this is not something my consultant has mentioned. It sounds like you are in good hands in terms of your care. Yes we do have to look on the bright side and enjoy life to the full on better days.
Like you and Oxfordboy2, my LVV presents with no symptoms, other than raised inflammatory markers. I guess we should be thankful for that, however during a period of relative calm with my head tucked firmly in the sand, the LVV progressed and caused some permanent damage to a calf artery. This was exposed through a PET-CT, and so up went the pred and the taper is underway again. Actemra worked brilliantly for me but I can no longer tolerate it and anyway, it masked the blood tests that should have alerted us to a relapse. The next adventure will be with a different "mab" or a "nib". We'll see how that goes 😉 😀
I was wondering if this was a routine PET/CT scan and if so at what intervals you have them. In the course of my reading I have seen references to the importance of Aortal scanning for LVV patients who don’t exhibit cranial or joint symptoms but so far my consultant hasn’t given an answer on how he will tell whether the inflammation detected in my PET scan last July didn’t go away/reduce as result of my initial 2 months on 60mg of Pretreat or subsequently. I have had fortnightly blood tests but he has now said these can be stopped until I am on other meds
If you are not on anything other than pred, your blood tests should indicate if the inflammation has been brought under control. Of course a PET is better but here in Australia at least, these are expensive and also involve radiation so they are restricted. Definitely not routine but probably twice a year. If you're not going on Actemra, which is brilliant for many of us but masks blood tests for inflammatory markers, you should be able to monitor with regular blood tests. That’s what I'm doing, fortnightly, and that gives the answer.
Thanks to Pred my blood tests have shown my inflammation levels were already well under control by the time I had my first appointment with the Rheumatology consultant at the end of August and have remained ok ever since. I think you are right that PET scans are restricted to twice yearly because of the radiation . I’m not sure what other scans are used to monitor Aortal inflammation / aneurism risk perhaps MRI? Now he has said my fortnightly blood test can be stopped until I’m settled on an alternative drug I won’t be able to check any changes to my blood indicators until I make a decision about which drug and get something prescribed - unfortunately I’ve been told Actemra isn’t suitable for me and I’m still not convinced MTX is right for me
Well I'm no expert, by any means, but there are experts on here who remain unconvinced about methotrexate. But then there are others for whom it has been helpful so I guess you will need to do your research, ask on here and discuss it with your Rheumatologist. But if your inflammation is now under control, I imagine you will continue to progress with tapering the pred. Are you still on 20mgs?
Unfortunately the Rheumatologist isn’t open to discussion. He just wants me to let his secretary know what I’ve decided in terms of which medication I want to take so I thought I would first ask on here for people to share their experience of taking MTX in similar circumstances. So I’m grateful for your contribution. I’m on 15mgs of Pred and doing ok this week but need to build up strength in my legs to walk more than a mile or so.
Sounds like you are getting there though. All the best with your taper and your exercise.
I was diagnosed with GCA in August’22 through symptoms only (dreadful headaches and lethargy) plus elevated CRP and ESR levels. Began on Prednisolone 40mg. In May ‘23 I had a flare, felt ok but my inflammatory markers had risen. A PET CT scan showed LVV. Back up to 40mg and Tocilizumab. After my year’s supply concluded I tried Methotrexate but that didn’t suit me. Leflunomide now but only one dose every other day as it causes gastrointestinal issues. I don’t have any symptoms of GCA and I never did have symptoms of LVV. Down to 5mg of Prednisolone now and see the consultant every 6 months and speak to the specialist nurse in between appointments. Not sure I will be offered a repeat scan to check the LVV or not. Hope you get sorted and can have some quality of life.
Thanks, unfortunately consultant says Tocilizumab isn't suitable for me. Interesting that like me you don't have the standard symptoms although my big problem is extreme fatigue. Do you feel Leflunomide is of benefit. I'm not sure how I am to tell whether the vasculitis is in decline if the side effects of the drugs I am taking cause the same symptoms as the disease. Since 2 weeks in on Pred my regular blood tests have been ok.
I was diagnosed with LVV via PET CT in Oct 2020. Methotrexate was spoken about a few times but I refused it as part of my LVV affected my liver and intestines so they couldn't really argue their case. I did have Tocilizumab for 18 months and got my pred dose down but as soon as it was stopped my symptoms returned. I also did not get on with the consultant and moved to one an hour away who has me reducing my pred by 0.5mg over 8 weeks which seems to be working so far. I am down to 5.5 - 5.00
interestingly I don't follow the vasculitis site at all.
Many thanks I do value personal experience. With a previous autoimmune disorder under Respiratory Consultant I was seen regularly and reduced Pred by 5 mg per month (and finally 3 weeks of alternate days on 5 mg. This worked well for me . I find my Rheumatology Consultant inflexible to the idea that this might not be best for me so perhaps I should consider asking for someone else
I keep an eye on the vasculitis site but not much is posted for GCA/LVV
I have the LVV form of GCA. No cranial symptoms of headaches or jaw claudication. No fatigue or general aches and pains, it was just neck and upper back, which physio could find no reason for, night sweats, and occasional flashes of light in eye when waking. I suddenly lost sight in one eye, CRP and ESR high, put on 60mg pred, back in October 2016. Gradually reduced but couldn't get below 10 mg without back pain returning. Added methotrexate and able to continue reducing pred. Now on 2 1/2 pred, plus 15mg methotrexate.
Thanks. It sounds like MTX has worked for you long term
Sorry this is a couple of days late. I have GCA/ LVV and was diagnosed in 2020. I think your steroid reduction would have really made me very unwell as it seems to have done to you. I am currently on 4.5 mg and I take Methotrexate which I have virtually no problems with. I occasionally get an upset stomach and feel a bit off colour. But not always. Like yourself I had a lot of problems with skin tears and prolonged healing time. I have also been extremely tired since starting pred. Prior to diagnosis I never had joint pains. I do no now but its related to spinal stenosis which is not connected. I also had a lot of skin problems and infections. Prior to diagnosis I had head aches every day and extreme fatigue. Gps said it was age related, hormonal fibromyalgia etc etc. On diagnosis my markers where around 130/129 which sent my GP into over drive. My fitness levels are at rock bottom compared to begore diagnosis .Luckily my rheumy is very good and easy to talk to and keeps a good eye out for any problematic blood test changes and phones accordingly.
Thanks. Good to hear MTX hasn’t caused other issues for you. Did the problem of skin tears go away? I currently have one which is still generating some fresh blood through the dressing after 17 days (nurse re-checking today along with another slowly healing) It’s been really sore and painful which is frustrating as I normally try to do Aqua class 4 times per week and have a walk each day (unless too fatigued)
Sorry to hear that you your skin tear is being such a devil to heal up. I haven't had one for while but saying that I haven't been out in the garden for a while due to Christmas and the very cold weather. I do think that it is less of a problem than when I was on high dose pred. When I have them I try to press the damaged skin back down if its still there and hold it tightly for a while and I have had it stick its self back down. I usually wash them first especially if I have been in the garden let them dry and cover them. It stings like mad. All depending on how big they are yours sounds quite deep. Great that you are getting a nurse checking it for you. I hope it continues to heal for you.
Thanks. I try to be so careful, take saline wipes and a range of dressings when I go anywhere and have become quite expert at dealing with them so was disappointed to get Cellulitis over Christmas. This time one was so painful and still bleeding after a week that I sought medical attention. Nurse has been excellent with follow up. Hopefully next week will be the last one. best wishes
Not what you're looking for?
You may also like...
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ)
PMR Increasing pain, ear pain.
Has anyone found acupuncture helps with the aches and pains of PMR?
Tapering and side effects
Tapering from 60 mg and Esophageal Spasms
Related Posts
Am I supposed to feel this "crappy?"
Help. On 25 mg of Pred for GCA moving onto methotrexate - advice on metho please :) 
First flare? 
Abdominal Pain
Painful and swollen handModeration team
