Hi Everyone,This is my first post,apologies if it’s a little long.I am a 74 year old male in UK.My journey started in March 2020 when my GP diagnosed GGA with PMR.I was started on 40mg prednisolone immediately and put on fast track to see a rheumatologist at the local hospital.I was seen the following week and had bloods and scans on my temple and armpits which showed some inflammation.The steroids worked within an hour,no headache,no joint pain,no jaw pain.It was like a miracle had happened.Strangely the letter following my hospital appointment came with a ? Against whether I had either PMR or GCA.Because of this conclusion and knowing the side effects of steroids I tapered off in 11 weeks.
All was good for exactly 1 year until the aches and pains returned,a flare up.Hospital put me back on 15mg prednisolone and suggested I take ompresole,vit d and calcium and alendronic acid.I took the steroids and declined the rest.Within a few hours all signs of a flare had gone and I began tapering as per the guidelines.Unfortunately within a few months I had a urinary problem that needed an operation.At the time I was still on 12.5mg and the surgeon would not operate until I reached 5mg.I worked out a plan with the rheumatologist which allowed the operation to go ahead and I continued tapering and took my last tablet on Dec30 2021 so I had this second time tapered to zero in 9 months with no problems.
I entered 2022 without any problems.Then in April I received an appointment with rheumatology.I was feeling absolutely fine but decided to attend.My scans were fine although my crp was at 26.The doctor was convinced I had something wrong and ordered a pet scan.This I had fairly quickly and it showed inflammation of my Aorta.This raised a red flag and they wanted me to go on Methotrexate.I had read up on this and was far from keen due to the host of possible side effects but decided I had better.I have now been on it for20 months.As I was feeling fine before I took it I cannot say that I feel any different.The side effects I have had were feeling sick,fatigued,gum ulcers and my hair has gotten much thinner and is still falling out.I should point out I began taking 20mg methotrexate once a week and 5mg folic acid on 3 separate days.I have lost all my leg,arm and most of my underarm hair.I also get spots on my scalp and neck.
At my last appointment with the rheumatologist 6 months ago I asked how they monitored my condition and how do they know if I’m better or worse.He suggested I have an MRA scan,similar to an mri,which I had which showed I have no current inflammation.The doctor agreed to reduce my methotrexate to 15mg to see if it helps with side effects.It didn’t.I had always taken my meds after breakfast but have recently changed to mid morning and it’s been a revelation.One other side effect I have had after both covid and flu jabs is extreme facial flushing.
My rheumatologist has suggested I will be on this treatment for 5 years.I am much keener to finish earlier.Has anyone else been able to stop sooner and also if you have taken methotrexate were you able to take a much lower dose?
Many Thanks for reading.
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Oxfordboy2
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Your rheumatologist is giving an estimate for you based on their experience of the illness. Some people may be able to stop treatment earlier and some later. It really depends on the individual.
Thanks,that makes sense and give me hope.I know there is only a fifty fifty chance of relapsing so I may have to reluctantly have to learn to live with taking some medication for life.
Hi and welcome… and no need to apologise about lengthy post… we need to know.
As the reaction to the Pred was as we would expect with GCA and/or PMR then I’m a bit flummoxed as to why there was a query from the hospital/rheumy .. sounds absolutely typical..
… slightly less typical was the fact you were able to get off Pred in such a short time on two separate occasions… but I think we probably would have assumed, like Arnold Schwarzenegger in Terminator - it would be back! in some form or other.
So have you now been diagnosed with LVV [Extra Cranial GCA]? If so why just MTX ?
With relapsing disease thought your Rheumy might have thought about TCZ [Tocilizumab] - perhaps be has, but discounted it because at the moment it’s only authorised for a 12 month period.
Those with LVV will be along with advice.
And at least he has been realistic with timescale many say 2 years and then end up with disappointed patients when it lasts longer … but he doesn’t know - it’s variable…
PS - did you have any problems with side effects of Pred - or just read leaflet and assumed the worst 🤔
Thank you for your wise words.When I listed the side effects to the rheumatologist he did offer to change me to Lefluomide.I looked up all the alternatives before our meeting and they all seemed to have similar side effects so I decided to stay with the devil I know.I did forget to put in my post that methotrexate has also given me chronic dry eyes and dry mouth.Sjogrens was ruled out.As to pred it did not give me too many problems.I was continually hungry and I did have some hair loss.In fact I was as high as a kite most of the time.I could have stayed up all night,didn’t seem to need much sleep.
High doses of Pred (in in fact even lower ones) can affect sleep.i was on 80mg for 2 weeks then 60mg for 8 weeks early days (cranial GCA) -but can’t say I was high as a kite -but certainly could talk for England!
Never on anything other than Pred -and that took just over 4 years to come off..
There's a load on MTX in the FAQs -but not much about Lefluomide. ..and TCZ hadn’t been authorised until after my GCA was in remission.
Just to add to DL’s, my GCA was diagnosed on the basis of symptoms and the fact that like you, 60mg was a miracle within 2 hours. My blood inflammatory markers were within the normal range and biopsy was negative, though debatably that was because I had been on high dose steroids for over a week beforehand.
Side effects can be managed, some eliminated and some just don’t happen to you. They are a price to pay to avoid blindness, strokes and aneurysms. I can see that when faced with a ‘small book’ of side effect lists, having theThe Miracle effect it is tempting to race down the dose ladder. In your case the symptoms took a while to resurface. It is not surprising that it was a wee while before they did because it can be asymptomatic, only found on post mortem or after a medical emergency like a stroke. This is why rarely some people go blind with no warning whatsoever.
As I understand it an MRA scan shows up narrowing of vessels and problems like aneurysms. It won’t say if the inflammation won’t come bouncing back or is there at a low level if you withdraw the immunosuppressants at this stage. The confounding thing about this condition is that other people’s disease trajectory has no bearing on yours. There are averages but where you are in that is impossible to say. I would say that this time, try not to be hasty, though we all understand why one is. We all want an end date and this lack of one or any concrete plan that is foolproof tries all of our resolve and is 80% of the battle.
I would be asking about TCZ as DL says because there is a lot of solid research for using it. Some people feel wretched on MTX too.
You are quite right about the scan.Although mine was clear of inflammation there was a small amount of narrowing which they expected due to my age.I did ask about TCZ but was told it would not be available to me at this time.I also didn’t feel great on MTX but am a lot better after reducing down to 15mg
Hello. I started treatment for PMR the same month as you, though it was another year before GCA and LVV became really apparent. When successive attempts to reduce pred did not work, I was given MTX. It didn't help me, but it did make away with most of my hair. (Of course, I'm quite happy with losing the leg stuff!) Originally I had one dose of folic acid per week, which was increased to 4x in view of the hair loss. This didn't help and so I was given it 6x weekly - every day except MTX day, and this DID finally stop the moulting.
As the MTX was of no benefit, it was stopped after 8 months, by which time I also had TCZ, which has enabled me to get to a much lower dose of pred. Though I wasn't actually able to stop it altogether. If you think MTX is working for you, then well and good, but if not, and you are offered TCZ then I would take it and run. Another lady has said recently that her TCZ prescription has been repeated after the year's allocation because she couldn't tolerate pred. I also have an open-ended prescription. It depends on the diagnosis your rheumy puts on the application.
Sorry I can't be much help. I don't know where the 5 years can have come from. I have heard that LVV can be a rather long process, and I have been given to expect to have to remain on a low dose of pred for good. Not what you want to hear, I know, but as far as I am aware TCZ at least does not make your hair fall out. And there is ongoing research, with at least one new drug in the pipeline.
That is interesting re folic acid.I started on 5mg once a week the day after methotrexate.This was upped to 3 times weekly to help with nausea.My hair has much less volume that it had,is much thinner and is very soft,used to be rather coarse.I have never been offered pred or anything else to go with MTX.This is a strange disease for me as I don’t have any symptoms unlike PMR where you have aches and pains.My hospital won’t offer TCZ because I can tolerate MTX although with gritted teeth.Thanks for your tips.I will run them by the rheumatologist next time I hear from him which by the way is this month but not holding my breath.
MTX only,no pred. It doesn’t make me feel great either. In the early days I found it difficult to socialise because I felt drained. It has got better with time and certainly has improved over the last 6 months after reducing from 20 to 15mg
Other more knowledgeable people have responded already, but I will just say that it really is so surprising that you are only on methotrexate and not prednisone. I did want to mention a product that has gotten very good reviews and that I just ordered to prevent hair loss. I’ll put a link here for you. It’s a nutrition-based supplement that includes folic acid and other anti-hair loss ingredients.there is a men’s product and a couple of women’s products. It’s pricey, but from what I’ve read and heard, well worth it for the results.
Just make sure it’s alright to use with high doses of Pred - and any other drugs you may be taking, particularly for blood pressure as it contains biotin.
I’m a bit late to this conversation but seem to be the only one responding with a similar history to you but on the DMARD Leflunomide (instead of Methotrexate). I was diagnosed with LVV in Feb 2021 though my journey started in July 2020. It took the intervening time to come off high Pred dose and for PET scan which finally diagnosed LVV. I then returned to 20mg Pred and over the next 12 or so mths tapered down to 3mg whereupon I began taking Leflunomide. It took a month or so to find the dose which worked (20mg). I stopped Pred in June last year. It wasn’t long before I could reduce Leflunomide to 10mg and now after almost 3 1/2 years on this journey, I’m in the process of tapering my Leflunomide dose by taking 10mg alternate days. I’m 2 months into that and still ok so🤞. If I’m able to continue reducing Lef over the next 6 mths or more I’m not sure whether to ask for another PET scan to confirm there is no LVV or not. I know they are very expensive. (The problem is that I have had no other symptoms apart from high CRP and ESR. They think my initial jaw pain was probably Trigeminal neuralgia since the PET scan did not show problems with blood vessels in and to my head and I did not have swollen blood vessels in my temple. )
At my last rheumy appointment in March I questioned being on Leflunomide and not Methotrexate as on this forum most comments I had seen seemed to suggest that Metho was the more common treatment for LVV. He told me that Lef is now the recommended medication. I have found only one side effect on this drug which he told me is common, namely looser bowel movements!! However, frequency has not changed and I don’t find it a problem.
So I hope you find this useful and good luck on your journey with this strange disease.
Hi Smudge,We do have lots of similarities in our condition and treatment.Do you mind if I ask if you are male or female?I am male and it seems from my research that most of these conditions effect more females.
My rheumatologist 6 months ago offered to change my MTX for lef due to my side effects but I decided to stay on MTX.He did at the same appointment tell me to reduce from 20mg to 15mg and this has helped me a lot.I am very interested in your tapering plan,was that suggested by doctor or your idea? I am supposed to have a telephone call from my rheumatologist this month,don’t think it will happen,but will talk this over with him.I also have no symptoms of this illness,in fact if I had not gone to a routine appointment I would be non the wiser.When I asked how they would monitor me other than bloods,I only have crp done no esr doctor said no regular pet scans due to the cost and the other said not to often as they are dangerous.I think I must also ask why I am only on 1 med,seems unusual.
Can I also ask if your rheumatologist has given you a time scale for treatment and will you ever be able to come off completely or does he think these meds are for life?
I have found your reply very informative and useful.Thank you for taking the time and good luck to you,hope all goes well.
re Oxfordboy2 query re male or female - can I please request you enter a bit more info on your bio - helps other members -especially new ones trying to find information. Thanks.
which concludes "LEF is well tolerated and might be effective for patients with TAK and GCA" which is hardly a ringing endorsement! The studies on LEF have been observational - a notoriously unreliable method of objective assessment.
What concerns me above all is the assumption that treatment that improves symptoms also means the disease process is under control. It has been found that even tocilizumab/Actemra doesn't prevent the onward march of the disease process with the other underlying causes of the inflammation. And they don't check,
In answer to some of your questions, I am a 71 yr old female. Early on when I saw my rheumy he said he was hopeful that, for me, I might be able to reduce my drugs completely but that there was no cure, rather people may go into remission. He said that it can take 2-5 years. I also know that you can’t have PET scans very frequently. Re drug reduction, initially the rheumy wanted me off Pred quite quickly in order for me to have a PET scan as it won’t reveal anything above a certain dose (from memory, I think 5mg?) and at that stage he wasn’t certain that I had GCA. It was also his suggestion to try to transfer to a DMARD as I got to lower Pred doses. It was in April last year when I started Lef and in October began reducing from 20mg through 15 to 10 on the rheumy’s suggestion. In September this year I asked if I could try alternate days ie 5 mg after 6 mths on 10mg. I don’t know how long they will want to keep me on this dose.
So that’s just my experience but we’re all different………….!
Thanks for your reply.You are the first person I have come across that has been given the same timescale as me for treatment.I know I am impatient to get to the end if possible but I also realise that I will have to takes meds for longer than I hoped.I will ask my rheumatologist when I next speak to him if I can reduce again as I have felt much better since my first reduction of MTX.Good luck to you.
I just read your post....and echo Dorset Lady's response. I'm a GCAer who has been tapering for four years, as well as taking Actemra for four years. Because of other health issues and forgoing my GCA meds, I had a flare. I'm now back on 20 mg plus TCZ , just reduced from 60. l immediately perk up when I hear 'jaw pain'.....is there any reason they cannot treat you with TCZ along with Pred?
I'm 83 now....and I don't care if I wind up taking something forever...as long as I can keep a fairly good quality of life. Walking with you, my best.
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GCA or not?
How would you know if LVV is flaring during a taper if it's asymptomatic? 
Now on the LVV journey too
GCA or not ……..
Not GCA
