I was diagnosed with GCA in May 14 (having suffered with classic symptoms since January) and have reduced from 60 mg per day to 3 mg per day. When I saw the Rheumatologist in September 15 I mentioned that my CRP readings had been slowly rising this year (24 in August and a higher reading in September-they didn't say how high). He referred me for a PET scan which I had in October 15. This showed inflammation in my Aorta and I have been told to go back up to 40 mg per day. I was offered Methotrexate to take along side the steroids but had heard about the side effects so decided against it. I am wondering now whether I should have gone for Methotrexate as the Registrar said it could mean I might come off the steroids 6 months earlier. Have people had good results with Methotrexate?
It is worrying to have to go back up 40 mg having got down to 3 mg, as I felt ok in myself. When (if!) I get off steroids, how will I tell if the inflammation has come back again if I don't get symptoms? Does this mean blood tests for life? My GP hadn't been particularly bothered about my CRP levels but I am her first GCA patient.
Thanks in anticipation.
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I have been on 8 methotrexate once a week since March. I have not had any side effects at all. I want off the prednisone!! I hate it!! Maybe you should take the MTX and just see??? Good luck either way!
There is no firm evidence that mtx can get you off pred any faster so I have no idea where that registrar got that idea from. particularly for GCA, and it is by no means sure that taking it will get you lower never mind off pred earlier. If there was evidence this were so mtx would be standard practice and it isn't. At present the mainstay of GCA management is pred and all mtx does is to change the way your body processes mtx so that you MAY get the same anti-inflammatory effect from a lower dose. Some people have used it, got to a lower dose and then had a massive flare of either PMR or GCA, requiring a return to high doses if it is GCA. mtx certainly does not replace pred in GCA.
There have been patients with PMR symptoms who were unable to reduce their dose of pred who took mtx as well and had benefit - there is, however, no proof that it was PMR they had originally since LORA (late onset RA) can present in an identical manner. Three smallish studies disagreed on the effect: one said it helped, one said it didn't and one didn't know.
It is a personal decision and if you decide to try it then that is fair enough - but if you take it and it does make you feel ill then it is not the end of the world deciding to stop taking it.
I asked my pharmacist for the latest studies on adjunct therapies and picked up the info yesterday. Quoting from his papers "Treatment with methotrexate is therefore recommend by EULAR. (European League Against Rheumatism) A meta-analysis of three randomized controlled studies testing the efficacy of methotrexate as a steroid-sparing co-medication showed a reduction in the relapse rate and a lower cumulative dose of steroid ......it goes on to say in GCA " it resulted in a significant reduction in the cumulative dose of glucocorticoids over the 48 weeks ....MTX was associated with a higher probability of achieving sustained discontinuing of glucocorticoids." There's a lot more I have to read through - TCZ, Entanercept,.......I'll be glad when I get to my specialist and ask him all about this.
I also have GCA in my Aorta Arch and Subclavian Arteries. Diagnosed May this year. At diagnosis my registrar also suggested mtx or two other "steroid sparing" meds (can't remember exactly but something like Azamine or Leufimine?). I did some research and like PMRPro says I could find no firm evidence that this would help, either by controlling the inflammation or enabling me to come off Pred quicker. The Mayo Clinic and the Vasculitis Foundation in USA have done various research and studies on this. Webinar videos are available on YouTube. It is a personal choice but I decided to stay just with the Prednisolone and not introduce another med with possible side effects. Suffering enough with the Pred!
I have also asked the same question about "flares" how do I know? As I have no symptoms the only way it seems is by checking CRP. So yes, I would guess even when I get into full drug free remission (and as a guess that will be at least a year from now) it would be prudent to have blood tests for the rest of my life.
Azathioprine and leflunomide probably. Also only used anecdotally as "steroid sparers" although there was a pilot paper using leflunomide from the Southend group where 21 out of 23 patients went into remission quite quickly (one dropped out). The follow-up was not very long however. I know a few patients who have tried leflunomide and have had to stop because of side effects that make pred look a positive pussy cat!
If they want to try something else then toxcilizumab would be the one I'd agree to try. There has been a trial, the results aren't out yet as far as I know though. A very small pilot in the US for PMR has been published which makes it sound outstanding, patients being off pred in under 6 months - trouble is it costs a fortune compared with pred.
My GCA struck over two and a half years ago. Started on 60 mg of Pred and got down to just 2mg before a relapse at the beginning of November to double vision again. That meant back to the start at 60mg of Pred. I'm now progressing (currently on 40 mg) but I can say that I am a long way ahead of where I was when GCA first struck.
Found out that relapses are common; about 38% of people suffer a relapse.and some more than that. My research shows that ESR nor any of the other lab based indicators are reliable - a new one is needed. Relapses can occur with ESR being in the normal range. That is why I have now started my own monitoring ( headache and severity, feeling of being ill at times, muzzy head, vision acuity etc) plotted on a chart in daily and date format. I also keep a daily diary to (a) make me aware of how I am and (b) to track appointments, taper steps, lab results and so on. My hope is to discover something that will both help me and be of use to others with GCA.
Finally, if you have not come across it before, do read "GIANT CELL ARTERITIS PATIENT'S SOURCEBOOK by Stephen Trutter ( available in print and e-book format). Also, explore anti-inflammatory foods. I have been having a good response to what i am trying (but it could be the Pred or both in combination).
A study done 18 months or so ago in London/Southend found that there was still evidence of inflammation in GCA and other forms of vasculitis even after 6 months at high dose pred even though there were no symptoms and the blood markers were normal. The signs they found were neutrophils (a white blood cell) present in abnormal numbers and there is some hope that this could be the basis of a better monitoring test for GCA/vasculitis in general.
It is common to experience relapses in the first 18 months after diagnosis - and the most common cause is reducing pred dose too fast or too far.
Thank you for the information. It's something I can discuss with my GP. I have recently put myself on an anti-inflammatory diet: oily fish, Ginger, cloves and so on. The diet seems to be working but not against my permanent headache. It seems to be helping the rest of my body in several ways. It's a useful diet to have along side of Pred. I have wondered whether the seat of inflammation is twofold. One causing the GCA and one for the rest of my joints and sense of well being. That's not very scientific I believe, but given some patients suffer from both GCA and PMR I wonder whether two sources of inflammation are taking place concurrently. Have you ever seen anything written or heard speculation about this PMRpro?
Whether you are told you have GCA or PMR depends on which size of arteries are inflamed.
GCA is a large vessel vasculitis - relatively speaking that is, they come in different sizes, the aorta is the largest and the temporal artery is fairly small, but any artery with an elastic component in its wall can be affected. That means that it is not just arteries in the head that can be affected and the name "temporal arteritis" is extremely misleading. GCA can be found in the aorta, and many other arteries in the trunk and up into the head.
PMR is almost certainly due to the microcirculation being affected - that is the very tiny blood vessels that supply blood to the muscles, a bit like the twigs at the end of a branch on a tree. Arteries subdivide again and again like a tree - but once they get to the muscles or to organs such as liver and kidneys etc they start to join up again on the venous side until they form one large vein returning to the heart and the lungs where the blood is stocked up on oxygen again and sets off round the body again.
In some people both the larger arteries and the microcirculation are affected - leading to symptoms of both GCA and the stiffness and pain associated with PMR. Many experts believe they are the same disease, just in different places or more extensive in some people. Research is currently being done by a big group in Spain - there is some evidence that in GCA it is the tiny arteries supplying the walls of the blood vessels that are affected. If that turns out to be so then that might be the elusive link between the two.
Very many thanks once more PMRpro. These is certainly and enigmatic problem. I am aware of other enigmas in nature such as Paget's disease where there are two forms . One affecting the breast and the other causing erosion and deposition of bone such that the limbs end up very distorted. I have in my front garden two Acer Griseum trees grown by me from the same batch of seed. They are sited next to each other but are different in colour of leaf and peeling bark. hence my thoughts on the possibility of different forms of inflammation. No need to reply but many thanks once again for your guidance
I really learnt from this post (I am new to PMR and am back-tracking to gain more knowledge). I would be keen to hear the outcome of that Spanish research.
Hi everyone, still waiting to see rhuemy. Doctor did blood test crp and sed normal. Had my eyes checked at hospital and that was ok. Still having temple pain (some days not much) and aching shoulders and neck most days. Reading over all the old posts trying to learn about this disease I came across this one. For years I have been to the doctors for blood tests for these symptoms (no GCA headache that started in June) They said every time I have neutrophilia and was probably caused by stress. Thank you so much for this information. I am very new to this and through reading these posts realise I have been having flare ups for nearly ten years (am 69) and have been told so many different things.
"as I felt ok in myself. When (if!) I get off steroids, how will I tell if the inflammation has come back again if I don't get symptoms? Does this mean blood tests for life? My GP hadn't been particularly bothered about my CRP levels, but I am her first GCA patient."
What type of symptoms were you used to get, from having GCA in your aorta if it's okay to ask? If you remembered these symptoms then if your aorta becomes "under attack" again, you would know?
Sorry, I can't help with your question about Methotrexate but I am curious about when PET scans are used in monitoring GCA. I live in Canada and I am not sure when they are used here for GCA patients. I potentially have GCA (symptom positive, biopsy negative) and I have a tingling in my neck and shoulder which I wonder could be somehow related to vasculitis in the subclavian artery (a branch off this artery supplies blood to the shoulder and neck I think). Does anyone know if there are guidelines for use of PET scans or other diagnostic scans for monitoring GCA?
PET scans are something unlikely to be used extensively for the monitoring of GCA as such - it is a high dose of radiation that you are being exposed to as well a radioactive tracer being used. And they are very expensive.
Ultrasound CAN be used to examine some of the arteries, the temporal and brachial for example, but you do need a trained and experienced technologist to do it and as far as I know, in the UK at least is only available in the research centres which were involved in the study comparing the results of U/S to biopsy where the doctors in the study were trained to do it.
Rheumatologists will use them in complex cases where GCA or PMR isn't suspected for various reasons and to see if another arthritis may be present.
Part of the lack of guidelines is due to the fact that these are relatively new and not widely available techniques. TAB (temporal artery biopsy) is available at any hospital with a surgeon and histology lab and has been done for years. It is the so-called gold standard: if it is positive it is 100% certain you have GCA. Unfortunately, it is positive in less than half of patient with the symptoms of GCA and may be a false negative for all sorts of reasons. So really GCA remains a clinical diagnosis - and that is dependent on the experience and clinical skills of the doctor.
MRI for me gave mixed results leading to a wrong negative report in the first jnstance. A duplex scan showed conclusively with ny history and blood results positive GCA, in temporal, axillary and brachial arteries.
An ordinary MRI is wonderful for something you are specifically looking for - but it is very easy to miss things. Using contrast of some sort to do MRA or PET-MRI will show far more - and probably enhance things they weren't expecting. Glad the duplex worked for you though.
l have GCA of subclavian brachial and temporal arteritis and started on Pred 60mgs in Aug. In Oct started on MTX 10mgs - side effects so far minimal - CRP and ESR very low - 2. I do still have some symptoms especially arm pain/cramp - but this is all new to me as I don't know my vasculitis journey as yet. PET scans don't se to be an option for me locally .
I thinkyou reducuced too quickly. I did the same thing and had to go back up to 40. I do not believe and there is no proof that meth. helps you get better quicker. I think you have to stay the course, whatever it is with the pred. I learned from the pro who has this disease down pat as far as when to reduce. I let the blood results EST play a big part in my reductions. I am fearful that by the time my body feels the pain my ESR might be back up to 85. I am presently 30/35 for this month. Took blood test today and am anxious for results. Some labs consider up to 20 normal and some up to 30.
Yes, I think with hindsight I did reduce too quickly. I am going much more slowly now!
Many thanks for your reply.
I can only share my own experience and please note all of us are different but I will still say this: I was on methotrexate and it made me feel poisoned and sick to my stomach. It was the worst time of this whole ordeal. After 5-6 months losing hair gaining weight as eating was the only relief I said "enough" and quit it.
Everyone I knew asked me what changed as I was now a different person.
I read studies about methotrexate and there is nothing conclusive about it so that is why I decided to stop besides the fact it was killing me.
i have been on Methotrexate 20mgs weekly for over a year (for past 4 months have been self injecting) as consultant said I was probably not absorbing full dose. I have had 3 awful flares recently, in July, August and currently. I was offered Rituximab over a year ago but was reluctant because of side effects and because I had Steven-Johnson Syndrome 6 years ago after taking Strontium Ranelate, an Osteoporosis drug,
Having been on 40mgs pred. I flared really badly when I had reduced my pred dose to 27mgs. I have had a haemorrhage in my left eye socket, jaw pain, headaches, vasculitis rash on legs, pressure in centre of chest, tachycardia, etc. I experienced visual changes. Have been on 60 mgs pred for past two weeks- eye doc said their normal procedure is to gradually reduce over two months to 40. Still on Methotrexate 20 msg.
My lungs are badly affected and very congested most of the time. This last attack really frightened me and a due to o have Rituximab (1st dose) next week. But am really apprehensive especially of developing Steven-Johnson again.
It is so difficult to know if I am doing the right thing in having it. I saw the chest consultant and lung function tests show deterioration in several areas due including peak glow which is now down to 240.
First really ill in 2011 and wasn't too bad till earlier this year. I had been on the Methotrexate and got down to 10 mgs pred when doctor told me I should gradually try and cut down the pred dose. When I got down to 8 everything went haywire and has got worse and worse.
Am really terrified of the Methotrexate and vasculitis and having a stroke and the tachycardia and eye socket haem. and even on 60 mgs pred the eye socket pain hadn't totally gone.
Sorry to ha e written so much but it is a relief to be able to express concerns without worrying family
I have just been diagnosed with aortitis. Every time I came off Prednisolone my inflammation went up. About two years ago I was put on Methotrexate and while I hated it it did mean that it kept my inflammation down while I came off Prednisolone, giving me a welcome break off the pills for nine months (I was diagnosed GCA December 2012 and have been on Prednisolone ever since apart from that period.) unfortunately, when I came off the Methotrexate my inflammation rose again so it was back onto the Prednisolone. With the new diagnosis of aortitis I am back on high doses of Prednisolone again AND restarting Methotrexate so that I can come off Prednisolone more quickly. Even if all goes well I won't be off Prednisolone until next September but Methotrexate does give you a break from a drug which, while I feel absolutely fine on it, is awfully bad for you, especially if taken for long periods of time.
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